Please Help a Teammate in Need
Good Morning Champions for MS!
Today I will be writing you twice. Once to help a teammate who is in need and another later today on tour business…It’s Sunday morning and I am a little pumped out after shoveling snow for 71/2 hours over the past 2 days, but as Lance Armstrong says “Pain is Temporary and Quitting is Forever” and as Champions we don’t quit…But that is not what matters..
I need your help….
October 20th of 2009, the son of one of our Teammates was admitted to Children’s hospital for surgery to remove a mass from his spine.
This is Alex’s Story, through the eyes of his parents Eric and Amy Brown :
Alex is a very active 4 year old. Everything changed October 20, 2009. Alex had complained over the weekend once about his neck hurting. We thought he was having a muscle related pain. He then wanted to wrestle and play hockey with Daddy so we thought he was fine.
Monday after school Alex’s neck was not quite straight and he had trouble looking to the left. This did not stop him from playing kickball with the neighbors. He went in for dinner and was more hunched over. It still looked like he had a stiff neck probably from playing. He was supposed to go to ice skating lessons with Daddy that night. He wasn’t too happy when Mommy said no.
We got Alex and Abby (little sister) ready for bed. Alex woke up crying several times. In the morning we woke him up and he had a fever and couldn’t walk. He said that his hands and feet felt heavy. After calling the doctor we headed to Children’s Hospital. After 9 hours in the ER with a ton of tests, the doctors really thought that he had a major infection. An MRI was recommended by Neurology as a final test to confirm what he had.
After the almost 2 hours for the test we see Alex and are on our way to go to a permanent room. We are stopped as 4 doctors approach us. We were told Alex had a mass in his spinal column that needed to be removed immediately. The mass was very large and putting pressure on his spinal cord which could lead to permanent damage. All were told is that he could end up being paralyzed or may regain back some function. Also that the surgery was risky because they didn’t know what they would see. It could last from 3-9 hours.
Alex was in surgery for 3 hours and they removed the mass which appeared to be blood but was sent to pathology. It was confirmed that there were no abnormal cells so this mass was not a tumor. Still the prognosis is unclear mainly since the surgeons have not seen this before. Alex’s hematoma was spontaneous and not from a trauma. Most instances this would happen if someone was in a car accident or hit hard. Alex’s was located high on his neck so it was as if a baseball was lined drived into him. Everything is so unknown and Alex is a special case.
Alex has had ups and downs. His lungs initially were not responding sufficiently enough to breathe on his own. This is due to the pressure on his spinal cord. He has not moved his legs or feet other than reflexive movements. Alex is fighting hard every day and still gives us his trademark looks and shakes his head yes or no to our questions when he is allowed to be awake in the hospital. Other setbacks have included a spinal cord stroke, pneumonia, H1N1 and Haemophilus Influenza bacteria all while being in the PICU.
In addition Alex’s lungs have collapsed many times and has had 10 chest tubes to try to evacuate the excess air. Alex has a trach now to help him get his lungs strong enough to breathe without too much assistance. To fix the continuous air leaks, Alex had to have surgery on his lungs. This surgery also is not a common one. The cardio thoracic surgeon was the only one offering a solution. The other departments didn’t feel Alex could get better. We would never give up on him and we are so pleased the surgery worked!
Finally after 11 weeks in the PICU, Alex has been transferred to the Children’s Institute as an inpatient. Here Alex will learn to get stronger and we will move on to the next challenge in this journey. Alex is in a wheelchair and still on a ventilator and getting feeds through a tube. Alex is able to eat anything he wants but is full after a few bites. The tube feedings are sustaining him. Alex has physical, occupational, recreation and speech therapy as well as school instruction. Our days are packed full and that is why we are here.
We appreciate and are overwhelmed with the support and love that has been given to Alex and us. Thank you for your support and God Bless Alex.
By the way Chuck and Bear are Alex’s favorite stuffed animals. They are here with him to keep him company.
Eric and Amy Brown are not only friends, and teammates but also neighbors, since October friends and neighbors have been rallying to help the family. Alex is an amazing young man who has shown incredible strength and courage..His infectious smile, and can do attitude is what reminds me so much of each and every one of you. Alex, like all of you is a Champion…
On Saturday, April 24th a 5K/5 Mile Run Walk will be held at North Park to benefit Alex and the Brown Family. Attached is the details of the event, I will also be posting on the web-site later today.
Attached is a registration form, sponsor letter and sponsor information sheet.
Sign up is also available on line
Below is a link to a Facebook page for this event:
http://www.facebook.com/event.php?eid=312699436392&index=1
A student of Alex’s dad at Pine Richland is organizing this event. Brian McWilliams.
I know that many members of this team are runners as well as cyclists, this is not only a good way to get ready for the marathon, but also a way to help a teammate in need. Over the past 4 years I have watched young Alex grow up(to Alex I am Mr. Jeff). I have also been moved by the strength of his parents, during this tough time. But what I have seen from Alex has not only inspired me, but so many others. This 4 year old boy, has shown strength beyond his years, and I urge each you to participate in any way you can.
I am also including the link to his Care Pages.
Read the update now:
http://www.carepages.com/carepages/ChuckandBear/updates/2535742?client_code=chp&ipc=mur
Alex is a dedicated Pens fan and this photo was taken a week
before he went into the hospital. Think of it two weeks before he was admitted he had started learning how to skate…
Thank you so much!
Heart..Determination..Courage..We are Champions for MS!
-Jeff H.