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John and Christopher were diagnosed with metachromatic leukodystrophy (MLD) on January 21, 2005. Jack was also confirmed as having MLD on February 18, 2005.
Metachromatic leukodystrophy is a progressive genetic metabolic disorder that affects the neurological system. Stem cell transplant is the only known treatment that can stop or slow the progression of the disease. According to the doctors, Jack had started showing very early signs of disease progression, but was deemed a viable transplant candidate. He received an unrelated cord blood stem cell transplant at Duke University on April 1, 2005. At this point, John and Christopher have progressed too far to be eligible for a transplant.
Timeline:
January 15, 2005 - John & Christopher diagnosed with MLD
February 8, 2005 - John & Christopher have surgery to get feeding tubes (mickey buttons)
February 14, 2005 - Jack diagnosed with MLD
March 22, 2005 - Jack admitted to Duke University Children's Hospital and begins chemotherapy
April 1, 2005 - Jack receives unrelated umbilical cord stem cell transplant
May 6, 2005 - Jack discharged from hospital but required to stay in Durham
August 14, 2005 - Jack and Bob return home to Chicago
September 13, 2005 - Jack has surgery at Children's Hospital in Chicago to remove one of his two central lines. Yeah!
November 29, 2005 - Jack is hospitalized for pneumonia at Children's Hospital in Chicago and is discharged on December 15.
December 29, 2005 - Christopher is hospitalized for RSV at Edward Hospital in Naperville and is discharged on January 2
January 4, 2006 - John is hospitalized for RSV at Edward Hospital in Naperville and is discharged on January 8
June 28, 2006 - Jack's central line is removed! At this point, he had lived longer with a central line than without one
September 25, 2006 - Christopher is hospitalized for pneumonia and discharged on September 28
March 26, 2007 - John, Christopher and Jack are hospitalized at Children's Memorial Hospital for rotavirus; Christopher also has pneumonia. John and Jack are discharged on April 1 while Christopher is discharged on April 4
May 16, 2007 - John is hospitalized for pneumonia and a lung empyema and is discharged on May 26.
August 31, 2007 - Jack is hospitalized for vomiting and doctors determine that he has esophageal stenosis. He is discharged on September 1.
October 11, 2007 - John is hospitalized for pneumonia symptoms.
November 11-13, 2007 - Christopher is hospitalized for pneumonia symptoms
March 2008 - John is hospitalized for influenza B
People have asked what they can do to help us.
First, we would ask that you pray for John, Christopher and Jack to be at peace and in good health, and pray for strength for Bob and Sonya.
Second, the Evanoskys have started The Evanosky Foundation, which is devoted to research focused on ending this disease as well as helping families going through similar situations. Click here to go to the Foundation website and click on "How You Can Help".
We also review the guestbook on this site and we appreciate all of the kind notes.
Thank you for taking this journey with us.
Jack thinks Dad is the best way to get around!
June 6, 2008
The family at Mt. Rushmore!
June 24, 2008
All of us are in a cave! Christopher (front left) and John kept looking at the ceiling!
Wind Cave National Park, South Dakota
June 27, 2008
Jack: "I love riding my horse!"
July 3, 2008
Christopher (left) and John are hanging out and having fun!
July 3, 2008
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John (left) and Christopher are smiling because their Dad ran the Chicago Marathon so sick kids with MLD could get better!
October 12, 2008
design courtesy of Katie Wahn
Journal
Tuesday, November 11, 2008 10:16 AM CST John and Christopher officially turned 7 last Wednesday! Yeah! Bob's parents, Auntie Kim, Uncle Larry and cousin Kyra were all here to celebrate. Kyra is 13 months old and lives in California, and she absolutely loved John and Christopher (she loved Jack, too, but he wanted nothing to do with her!). The boys enjoyed opening their presents and they had some frosting from their cakes. We played with the new flying toys they got and they were all smiles. I was able to get some good video, so I will be putting that together and hopefully posting it shortly.
We went to Jack's parent-teacher conference this past week, too. Jack is working with augmentive communication devices such as switches with him. They are also trying to get him to do more routine activities such as take his snack out of his bag himself, take off his coat himself, etc. Jack many times likes to make other people do these type of tasks for him, so this is something we want to work on. He even does this with his horse riding--he wants other people to tap the horse to make the horse walk on rather than do it himself. We are hoping that by having him do these tasks himself and using switches that he can understand that he will have more "control" and therefore "like" to do more of these tasks. That's the theory anyway!
We finished another house project two weeks ago and knocked out the wall between our main room and Bob's old office. This gives us a lot more room in our main room, which gets especially crowded with wheelchairs, bean bags, etc. We moved Bob's office into our front room, so he now has more space, too.
The boys are continuing to do whirlpool therapy a few times per week. Bob made a chair out of PVC that the boys can lay in while they're in the whirlpool, so they can soak in the water. John likes to lay in the chair and watch Star Wars--he's just like his dad!
We Win in the End,
Sonya
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