I went to Dominican Republic expecting a miracle. Will he walk out of the clinic? Maybe he will say his first full, clear word. What will it be? All throughout the long journey I kept fantasizing about what the miracle would be.
I went with a heart full of faith. Something felt different about this treatment. Something felt powerful. I can’t describe it, but deep within me, something stirred, something gave me hope.
So we landed at Dr. Rader’s clinic in Dominican Republic with very high expectations. Nathan was excited to receive the stem cells, I had been whispering in his ears for days that he was going to have a very special treatment. I had been asking him to welcome the cells wholeheartedly to his body, to appreciate that they were coming into him to help him, to steer them and guide them to his brain. I could feel his acceptance.
The treatment was simple. They started an IV. The IV nurse was wonderful – she got the IV in on the first try, which is unheard of for Nathan, it was virtually a first. Then we waited.
After a short while Dr. Rader came in with two small injections. I couldn’t believe so much hope was placed into a couple of injections with less than a teaspoon of liquid in each. I held them in my hands and prayed. Then he placed one of them into the IV, and the other one was given to him via 4 shots in his thighs, 2 in each leg.
Nathan didn’t even cry. I held him and whispered to him and told him about the miracles that were about to happen. He watched Elmo in his DVD player and accepted.
After the shots we waited. I watched him like a hawk, looking for the miracles. After about 20 minutes, Dr. Rader said we were done, and sent us back to the hotel. All the while, I looked and waited. When will it happen, I wondered?
We arrived back at the hotel and I was excited, nervous, happy. I saw another family that we’d run into at the clinic, so I asked them how it’d gone.
The mother was virtually levitating with excitement. In just a few hours they had already seen many miracles.
Their son Euwen has moderate Cerebral Palsy. He’s a gorgeous little boy of 6. He can walk with a walker, speak, and is just radiant. They started telling me about all the miracles they had seen. For the first time in his life, Euwen was able to take reciprocating steps. Usually he drags both feet together when he’s in his walker. But minutes after the stem cell shots, he was able to take steps in his walker with his feet flat on the floor. In the past he always stood on tippy toes and couldn’ t place his feet flat on the floor.
He stopped having spasms. I heard this from Euwen’s own lips. “Mommy, I’m not spasming anymore.” Then he showed off a bunch of new skills. He could move his wrists and hands in circles. He could draw circles with a pen and paper. He could move his arms and hands effortlessly. His body was relaxed and his adductors loose. All throughout the afternoon and night he showed us new things. “Dr. Rader fixed me!” he said.
Through it all, I kept watching Nathan like a hawk. “Has he done anything?” Terri and George, Euwen’s mom and dad, kept asking.
He’s a little more relaxed. He’s holding his head up a bit better. He seems to be standing up a bit better. But nothing major. “Don’t worry,” they said, “it will happen.”
We said goodbye to Euwen’s family and started our journey back home. I had heard of a child that said his first word on the way home from Dr. Rader’s clinic. So on the whole journey home I listened and kept saying different words trying to get him to repeat them. And then the plane landed in LA, and we were back home, and Nathan wasn’t walking or speaking.
So now that we’re back, a lot of people have asked, how did it go?? Did it work??
Yes. Definitely yes. Perhaps I didn’t see the huge miracle that I expected. But I see a lot of little changes, which in a child like Nathan, are very important. His hands are more relaxed. He can open them and reach for things easier. When I hold him against me, he holds himself better. On the plane home, he was able to reach for, grab, and hold on to a banana. I usually force him to grab it and motor him through the motions of taking it to his mouth. This time I was able to turn his hands towards his mouth very easily, and he held on to the banana by himself. He sat up watching his DVD and held his head up in midline. His head and trunk are stronger. This morning he took some steps towards me while Owen held his body up. He is more alert. He is vocalizing more. His tongue is moving better. This morning we gave him some snacks and he was moving his tongue and chewing the cracker, instead of trying to suck on it, like he normally does. On the way down to intensive therapy clinic this morning he was holding his body up while sitting in the car seat.
A good friend who hasnt’ seen Nathan in about 6 weeks saw him this morning, and commented on how well he’s doing. Maybe I couldn’t see a big difference because I’m with him all the time, but she does see a big difference.
It’s hard to describe all these little changes. Seen by themselves, they’re not major. But seeing them all together, all happening right after the treatment, I know it’s the stem cells. I know they are working in him.
Can they unfuse his brain? No way. But maybe they will become new brain cells. Maybe they will form and become a corpus callosum. Maybe they will become occipital cortex. Maybe they will create new synaptic connections. Maybe they will create a completely new area of the brain that can take over motor skills. Since he is missing so much brain tissue, I don’t see why this couldn’t happen.
I have faith. And this was the miracle. This treatment helped me to have faith again. This treatment reminded me that it doesn’t matter what we do, what matters is whether or not we believe. In this journey I learned that I have to believe with all of my heart. Believing is achieving.
I was also blessed to see Euwen’s miracle. It gave me even more confidence in the treatment. I can’t describe how amazing it was to hear Euwen boasting about all the new skills he acquired in just one day.
I think the stem cells will take some time to work in Nathan. Euwen’s brain was moderately damaged. Nathan’s brain is severely malformed. So they have a lot more work to do in Nathan. It will probably take time. But I know they will keep working, multiplying, and helping him.
Most importantly, I feel that we did the right thing for Nathan. We are doing everything we possibly can to help him. We gave him a huge offering, and I don’t regret it for one second. Even if it only helps him achieve little things, it’s worth it. But maybe over time we will see bigger and bigger accomplishments. If we don’t, it’s okay. We tried, we did our best.
I have finally arrived at that place where dichotomies intersect and abide in synchronicity. I used to think that if I accepted Nathan’s condition I didn’t need to do all these things to help him. That doing all these things to help him meant that I didn’t accept him with his limitations.
Today I understand that I can accept him 100% for who he is with his level of skills and abilities, while offering him opportunities to develop new skills. It’s not different from a parent taking his child to swim classes, baseball, art, etc. They accept the child for who they are, while giving them lots of opportunities to learn and develop new skills.
So this stem cell journey brought us big and little miracles, and lots of faith.
Tommorrow Nathan starts his intensive therapy at NapaInstitute.com We hope that the intensive therapy will orient the stem cells so they are used for motor skills. We are excited to see how the program goes.