|Blye's Quest continues for this 6-year-old|
|Written by Darci Tomky|
|Wednesday, 29 February 2012 15:22|
“If this is all that happens for the rest of our lives, we’re good with that,” said Andrea McCallum one year after her son Blye received a stem cell treatment in Germany. “It’s worth it—it all is.”
Andrea and her husband Gary didn’t have expectations of “fixing” Blye, who has Cerebral Palsy, but simply wanted to give him the opportunity of a better life. “All we wanted was to see improvement somewhere,” said Andrea.
And the McCallums certainly have seen improvement since Blye’s procedure in February 2011.
“Personality-wise he’s changed so much!” said Andrea, noting how mature 6-year-old Blye is now. He can handle situations better and work through the stressors more easily.
Before, when he encountered a stressful situation, it “wreaked havoc” on Blye physically. In the past year he’s been much more relaxed, and his body is much stronger. He can easily bounce back from long days at school and other activities.
Blye used to have a roller coaster of good days and bad days, but he’s had significantly fewer bad days in the past year. He doesn’t seem to have to work as hard to do the simple movements.
This past year has been one of exciting changes and improvements
Andrea said the biggest change physically is that the involuntary tightness in his hamstrings is definitely more relaxed, especially in his left leg. Now he can put his legs out straight while sitting on the floor. He can also sit up for longer periods of time.
“He seems a lot more together,” said Andrea, noting Blye has found out who he is and has not been as dependent on his parents.
She said at first it was hard for her and Gary not to analyze everything Blye did, but when other people started noticing improvements too, it helped them see there really were changes taking place in their son.
Following the stem cell treatment last year, Blye went through extensive therapy in Denver three days a week for almost two months. Because the traveling was hard on the family, since then he’s just been attending his regular therapy sessions in Wray once a week.
Before the procedure, Blye had an MRI, and he will have another one soon to evaluate his one-year progress. Doctors told the McCallums it would take six months for the stem cells to attach to dead cells and start to grow, so after a year they should be able to see if there’s a difference. He’ll probably have another MRI at the two-year mark as well.
Andrea said the doctors here aren’t sure exactly what to expect since stem cell treatments are not performed in the United States. “It’s new to everybody. We’re forging the way!” she said.
Blye hasn’t experienced any health problems in the past year, so life is pretty good for this little 6-year-old.
Blye gets a voice
The McCallums have always said Blye can speak volumes through his eyes, but now they will actually get the opportunity to give Blye a voice of his own.
In January Blye was evaluated and approved for a DynaVox—a special computer system with a touch screen and an eye-tracking device.
Two years ago at an evaluation for a power chair, the McCallums looked into DynaVox. They were told Blye wasn’t ready for the computer because he didn’t have enough head and trunk control to keep his eyes steady for the scan to work.
Now the family is ecstatic about the DynaVox they’ll receive in a month or two. Andrea said during the evaluation, the computer system was like second nature for Blye.
The DynaVox comes with 30,000 pre-programmed pages with everyday objects and phrases that Blye would need to use in a conversation. Blye can see a picture of the item, but he can also “verbalize” the words through the audio on the computer.
Even though Blye cannot speak on his own, his parents have known that his cognitive was never an issue. They know he can soak up information like a sponge, but they don’t know how much of it he retains.
“This is the first time he’s been able to freely communicate,” said a teary-eyed Andrea. “It was the coolest thing to hear him say ‘I love you’ and know he meant it.”
She said the computer will allow his true personality to come out. For instance, Gary and Andrea are constantly joking around with Blye, but he’s never really been able to joke back. At the evaluation, the consultant asked if Blye wanted to tell his mom he loved her one more time before he left. On the computer screen he chose “no” and “yucky.” Gary and Andrea laughed, thinking, “He’s so our kid!”
“It was his personality, not our interpretation,” said Andrea.
The McCallums are excited to see how the DynaVox helps Blye in school as he finishes kindergarten this year and heads into first grade.
Sporting his favorite color orange and his favorite pair of sunglasses,
Will there be more stem cell treatments for Blye?
One year ago the McCallums knew there could be a chance Blye could continue receiving more stem cell treatments, hoping for more improvements each time.
“That’s the sad thing. I don’t know if we’ll ever get to go back,” said Andrea. She didn’t know all the details, but she does know the XCell-Center in Düsseldorf, Germany, where Blye received his treatment, has been shut down.
Andrea said when there is something as experimental and controversial as stem cell treatment, there’s always that risk that the government will step in.
When they first researched this clinic in Germany, Andrea said they felt good and comfortable about it, and the timing was perfect. Germany has similar medical standards to America, so they never felt like it was risky or a bad environment for Blye.
Now they are a little more skeptical about the clinics they’ve heard about in places like Lebanon, China, Mexico and the Dominican Republic.
“We’ve never felt like we were desperate,” said Andrea, noting she won’t be taking her family to any of those places because of safety concerns and it simply just doesn’t feel “right.”
“We’re just going to move forward from here,” she said. They are perfectly content and happy with where they are now.
Of course, Gary and Andrea would love to see Blye walking and talking some day, but they have to remind themselves to step back and use logic. They have to ask themselves, “Am I doing this for Blye?”
They would jump at the chance for another stem cell treatment for Blye if the opportunity came along, but they aren’t so desperate that they will push it when the conditions aren’t right.
The McCallums know it is a controversial subject, but they take to heart the advice of one doctor they’ve spoken to in the last year. “It doesn’t matter if it’s controversial. If you feel like it worked, then it’s worth it.”
Some people are also questioning whether or not Blye’s improvements can be linked to his growing maturity as he gets another year older.
“I don’t care what anybody says about Germany,” said Andrea. “I wouldn’t trade it.”
Blye McCallum’s grandparents, Paul and Sheila Gift, accompanied the McCallums to Germany for Blye’s treatment. They are pictured strolling through a German marketplace, giving their grandson some fresh air after his stem cell treatment in 2011.
Holyoke Enterprise March 1, 2012