Micah was five when he was diagnosed with very rare and aggressive lymphoma - anaplastic large cell lymphoma. Nowhere else was even an option for me. I have had experience with M. D. Anderson in the past. I had my teenage girlfriend, was treated here more than 20 years ago. And is still alive and doing well. When I first came in, the wonderful Child Life staff greeted us and took us around and said, this is the play room, and I cried, because I didn't want my child to play in there. And this is a school room and I cried. I didn't want my child to go to school there. And this is the family room, and I cried, because it’s not where my family was supposed to be and this didn't happen to regular people and this didn't happen to normal people. And this happened to someone... even though I had seen it already in my youth. It just was unbelievable, I couldn't soak that in.
He used to call it the kool aid, and he would get really sad-faced when he would see a new child come in and he'd see the red bag hanging on the pole and he'd go, oh, they got the kool aid. Because he knew how sick that it made him. First time he got it, he was going in and he asked me for chocolate milk and I brought it to him and then I came out of the room all wide eyed covered in chocolate milk where he had just sprayed me with it. And the nurse smiled and said - Oh, it's the just the first, the first of many.
Ask questions. You need to learn about your child's disease. Learn everything that you can, and I would say, internet is not the way to do it. [ Laughing ]
Absolutely not. There's the good things you can find on there, but talk to your doctor, your child's doctor, the nurses, get to know everybody that has anything to do with them.
They call him the candy man here. I don't know if you knew that. He, we were inpatient so much. And we kept a big ol’ bowl or basket or a bag, whatever we had, full of candy. And he - every morning, every evening, he said had to make his rounds like the doctor, and he made sure every nurse and every doctor had candy.
The Children's Art Project is phenomenal. He's done some really awesome art projects. He loves that. They play hockey and baseball in the PediDome. They have outings. And they go in style, girl. Limousines, those kids go on field trips in limousines. It’s awesome. They'll go everywhere from the Chocolate Bar to the Zoo.
Normally you see me dragging around a big bag of crocheting, or if the project gets too big I push it in a wheelchair wherever I'm going. And I would just make blankets and I made them for all my kids, and he would always have one on his bed so he knew that there was something kind of from home.
You feel so confused and so afraid and so out of control, that if you open yourself up and let that come out, that it just might be completely chaotic. You're afraid to go there. And I stepped out a little bit and I went to Candlelighter’s meetings. And then I went again. And I talked a little bit. And then I had a melt down in the Candlelighter’s meeting.
[ Laughing ]
And little by little, as I let that go, we started to live up here. I think that we would do our children a great disservice to start grieving today while they still are breathing and still are living. So I say that we make today a party. And we make tomorrow a party and we make everyday a party until the day comes when we're forced to have a grieving.
Your relationships do suffer. They're going to do that. You're going to feel all kinds of feelings when you go home and I missed basically all of my daughter's high school years, because we've been here. And my son is 11, he was in second grade when we started this. And now he is as big as I am, and he's a young man. And I could just let that tear my heart out. We'd drag out a whole bunch of blankets and everybody would pile up on the couch, together where everybody's got some physical contact and watch a movie, something funny so we'd laugh and everybody would usually end up falling asleep on the couch together and those close times...
I want to go home. I want to make Hamburger Helper and I want to sit on the couch with my kids. That's all. I want to wear my pajamas and sit at my desk. Nothing big. This is a horrible thing to go through. It’s going to tear your heart out. I've hit the floor many times. Stepped outside. Not in front of Micah, but stepped outside and just been on the floor sobbing and I’d get myself together and come back in.
I anticipate to go home and plant my garden and play with the dogs and gently ease myself back into the mommy role and he back into the regular, what is regular, to I don't know, what role? I guess it’s going to be the same way we got here. One day at a time, step by step. Yeah. Still make everyday a party.
Don't close yourself off. Your child needs you. Your other children need you. And when you feel like you don't have anything to give, you have to dig way down in there, pull out something for them. And they, they'll give back. It all can work, and it can work very, very well.
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