Mom Hijack #2: A New Frontier

With some excitement, and trepidation, I want to share with all of our beloved friends and family that Kai is on his way to a New Frontier. Next month we will be traveling to Houston, TX so Kai can be part of a clinical trial. He will be one of 30 children in the country who get to take part in a study for children with cerebral palsy, looking at the efficacy of using stem cells from bone marrow (15 children) or cord blood (15 children) as a treatment.

This is a big step for all of us. Deciding to give your child over to science is not an easy decision to make, even if the risk is low. We always said that we would only pursue things that would not cause harm to Kai. While this has a very low risk, we are still dealing with medical procedures, so inevitably something could go wrong. Ultimately, our decision has been thoroughly thought-out, researched, examined, stewed over, cried over and come to rest.

Logistics
We will travel to Houston four times over the next two years. On our first trip they will do an evaluation of Kai's current skills to get a baseline, then they will do an MRI, bone marrow harvest and infusion (we did not bank Kai's cord blood, only Liam and Addy's, so he is not eligible for the cord blood arm of the study). Five of the children in his "arm" of the study will get a placebo. Of course, we will not know if he receives the placebo or not. This trip should be about 3 days.

Our second trip will be six months later. On this trip he will have more evaluations and another MRI. The third trip will be six months after that, so about a year from our initial visit. They will do more evaluations and at this time we will know if he received the placebo. If he did receive the placebo, he would be eligible to receive the treatment at that time. Then we will return in a year's time for the final evaluation.

Opportunity
The researcher, Dr. Cox, has done similar work with children who have had traumatic brain injury. He is currently conducting a second study on this topic. A doctor at Duke has been looking at cord blood treatment in CP kids for a number of years already. We know people who travel to other countries, and pay LOTS of money, to get the bone marrow treatment, just like this one. So, this is pretty cutting edge stuff. Apparently, they have at least 150 kids on a waiting list to be part of this study if we chose not to be.

Of course, no outcome can be predicted or promised. But we do know that children who have done this type of treatment are having results, along with the children in the studies at Duke. While everything up to this point has focused on therapy to overcome what Kai can't do, this would actually be trying to work from the inside- out- and focusing on his brain. Genius! Some of the possible outcomes we have heard include: cognitive improvements, increased motor control, increased oral motor skills and speech. We know that nothing is a "silver bullet".

Support

Some areas of study (i.e. Autism) receive regular NIH funding for research and clinical trials, cerebral palsy is not one of them. Research for CP treatments are usually funded privately. Because of this, and other factors, there are not many studies looking at treatments for kids with CP. Typically, participants of a clinical trial do not have to pay to participate, however, due to the lack of funding we will have to share some of the cost. Dr. Cox had to make the decision to not move forward with the study, or pass the cost on to participants. Knowing parents in the CP community, he chose to move forward, realizing this is an important area that needs further research. If you want to read more about the lack of funding for the CP community click here.

We are doing a fundraiser to help Kai get there! Our goal is to raise approximately $10,000, which will cover the cost of hospital fees and our four trips to Houston. Any additional funds we raise will be donated to Let's Cure CP!, one of the organizations that pushed to make this research a reality.

Asking friends and family to help us financially is not something we enjoy, but our dedication to Kai's progress trumps our pride, so if you are able to help please click below.

The Decision
Obviously, this decision has been difficult. For those of you who know us best, know that we have taken Kai to numerous alternative therapies and tried everything we felt could help Kai, and have had varying degrees of success. Don't get me wrong, I don't feel like we have wasted any time or money. Little achievements are just as good as big ones, and it is all part of our journey. Without investing in one thing, we would not have gotten to the next. Through it all we have met amazing people, and learned that our bright, smiley guy is an extremely hard worker and delights in whatever he is doing (most of the time).

Part of the decision was us rationalizing to ourselves what we wanted for Kai, and our motivations for trying new things. The other part was dissecting the multitude of questions swimming in our heads: Are we trying to "fix" him? Are we on an endless quest to "cure" his afflictions? Would he want to do this if he could make the choice?

Our conclusion was that we are not trying to fix him, only to make life easier for him. In the beginning, before we knew much, we were trying to overcome his obstacles and get him over the developmental "hump", but it didn't take long before our perspective was altered.  What were initially frantic attempts to change his fate, became an acceptance of Kai and what he brought to the world. We are no longer frantic, but we still keep plugging along trying to find ways to make his world more manageable.

If Kai never developed one milestone past where he is now, we would be fine with that. He is a lovely, happy child who touches so many hearts. But for him, living in a body that WILL NOT cooperate is difficult. Imagine that every time you tried to use your hand to pick up a simple object your arms were yanked back so you couldn't get to it, or you reached the object only to knock it away. It is unrelenting. Despite this, Kai is one happy dude (I cannot tell you how lucky we are!).

Currently, Kai cannot take care of himself in any capacity. He can make choices and communicate to a certain extent, but he cannot tell me if someone hurt him or advocate for himself. He cannot use his hands well enough to use a device to communicate. With time, these things will improve, but to what extent we do not know.  We need to make every effort to give him any type of independence, even if it is to be able to isolate movement in one finger to be able to tap a keyboard.

In the end, while we really don't know what outcomes may be seen, the possibilities of this opportunity for Kai, and others with CP, are very promising. To be a part of that is an honor.