The BMT Journey Living in the Moment

"According to the MPS society, my son LB is the only kid in New York state that has MPS I. That’s why Mandy and I clicked, besides our personalities. Mandy’s son, Brinley, has the same diagnosis.

The MPS society told me that we would be here at the same time. I looked at Brinley’s Myspace page, I saw his picture, and I started crying. It was the sudden realization that my kid has a disease and looks like everyone else with the disease."

"There’s lots of reasons why we click. I don’t know if it’s that the kids are the same stage, or we just feel the same about it.

We are inseparable when we are not in the room. Mandy is my support system, and I don’t know how she can support me, when she is going through what she is going through. It is so nice to have somebody who understands."

"I got a phone call, LB has MPS, and I started reading about it online. I read that normal lifespan is around 10 years, 2 to 4 years without any treatment. I started breaking down.

All your decisions change. The first initial thing you deal with is that my kid is not normal. The picture you had in your head of your kid playing little league is gone. The way you see your life completely changes."

"My geneticist flat out told me, I don’t know anything about this, but I will find you help. He said to go to a place that specializes in Hurler's, it is too rare. You feel helpless, so you don’t want to go to a doctor that is looking stuff up, too.

The MPS Society said the University of Minnesota is the best place to go. He flat out told me, I can’t tell you where to go, but if it were my child, I would go to Minnesota."

"The MPS Society gave me Dr. Orchard’s number. I called him when I didn’t know what else to do. Within 45 minutes he called me back.

My doctor who I had been seeing regularly didn’t even personally call me with the results of LB’s blood test. Then we have Dr. Orchard, who doesn’t know us, talk to us for an hour about the disease, treatment, and what they are trying to do. They pretty much set the schedule right then."

"I went through three weeks at home where people were guessing and looking things up. I felt like a guinea pig. I felt like the first person in the world going through this.

I came here, and we are clearly not the first people dealing with this. The first week, you go to all these specialists and get test results back. People said it sounded overwhelming. But it’s not, because everyone you are surrounded by is a person of knowledge."

"They are very good at preparing you. They almost give you a schedule of what is going to happen, and they are completely honest.

These last few days have been really easy for LB. Dr. Tolar came in, he said, ‘How is LB doing?’ I said, ‘He is doing really good, he is eating, he hasn’t vomited.’ And he said, ‘But you know, he is going to get sick.’

He doesn’t want you to be caught in denial, but at the same time, you want to hold on to every good day you get. Every second."

"Don’t look ahead. Don’t have any expectations. Don’t look back, don’t look forward. You live for where you are at. You cherish everything.

Live every day for what it is. Cherish every moment. We always say, a day at a time. Sometimes a minute at a time, sometimes a second at a time, sometimes an hour at a time.

That is the only preparation that you have."

"LB is -5 days from transplant, and so far it’s been pretty easy. This is the gradual process of them wiping out the cells. Some kids get nauseous, but he is playing through it.

Mandy says that days +5 through +15 are the hardest. That is when they have no cells left, they get sick, they have no immune system."

"Transplant day, I got teary, but mostly overwhelmed with the feeling. It’s here.

Brinley’s transplant took 15 minutes. It’s amazing. You build all up to this day, and it’s done, and then it’s a waiting game. Once it was done, it was no big deal. Later, it hits you. Brinley just got all his new blood. It really does start now."

"I didn’t cry again until Brinley crashed. He was on a ventilator, oscillator, to ICU, and now you can see his belly higher than his head. They didn’t expect this, but they never know. They tell you that.

We know the doctors will do everything in their power to help him. The worst feeling was when he was first diagnosed, being helpless. Here they tell you, ‘this is our game plan.’

You take the moment you have. You learn not to look back. He’s breathing, he’s here."

"Day-to-day life in the hospital is hard, but it is comforting, because you see the same faces. Those people are your support system. It’s like a little family. Those nurses and doctors and other parents become your friends, your family. You look forward to seeing them. I can’t wait until the nurses get in sometimes. You get to pick the nurses who care for your kids, and then you grow to love them. They do so much for you.

I trust 5D so much. They are my support system."

"In a typical day, you wake up, you give your kids the meds they need, a kiss and a hug, and say today is going to be good. There is a kitchen, you can get your breakfast cereal on the floor. If the nurses don’t have a lot of patients they will sit with your kid so you can go down the hall and brush your teeth.

It’s not unusual to wear the same outfit three days in a row. You look the same for days on end. Brushing your teeth is as far as it gets. You haven’t slept in three days, and people say, ‘you look great!’"

"I don’t know what I would do without my girls Molly and Lilly. They are therapeutic to Brinley.

At first they didn’t really understand, but now they are asking questions. They feel comfortable asking because we have been honest. The Child-Family Life specialists, that’s the best program. They made blood soup with the kids. It helps them understand."

"Listen to your doctors, and your instinct. They will tell you straight-up what they expect to happen, and what they don’t expect to happen but what could happen. What they tell you to expect, know to expect it. You don’t want to be surprised when something happens. Mentally you have to prepare yourself for the worst-case scenario. You need to know the reality.

You can’t blame anyone. You can’t blame yourself. With genetic diseases, it’s easy to blame yourself."