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This fundraiser ended on 10/31/12

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No family should have to worry about a sick baby and how to get extra money to pay bills. Lets help them out where we can.

  Alex is an amazing 2 year old little boy. He was diagnosed with a chromosome disorder when he was 2 months old. The disorder is very rare and doesn't even have a name, just a duplication of chromosome 4 and a deletion of chromosome 8. At the time he was diagnosed no doctors could tell us what to expect or how this would affect Alex. We took things day by day and found out that Alex is a very unique little guy. He has problems with severe obstructive sleep apnea, asthma, hypotonia, partial seizures, anemia, eczema, developmental delay, speech delay, sensory problems, slight hearing loss, and a clotting condition. He has had several other health problems over his short little life, but those are the main ongoing health conditions Alex lives with. With all of his health conditions Alex is the happiest little boy and can put a smile on anyone’s face. He handles everything so well and has such a great attitude and wonderful personality.

  On April 20, 2012 Alex had an MRI done of his brain for his developmental delay and partial seizures. They found a tumor. The tumor was about the size of an almond and on his skull. He had MRI’s, ultrasounds, a PET scan, x-rays, blood work and more done since that day. On May 8th he had surgery to remove the tumor. The neurosurgeon was only able to remove approximately 90% of the tumor. That seems like a lot since it was only the size of an almond, but the part he could not remove was too close to his brain and they could not safely remove it. Alex recovered remarkably well from surgery, even surprising the doctors. They were going to let him go home the next day, but mom was a little too scared to take him home that soon! Then the wait began, what kind of tumor did Alex have and what was wrong with my baby? We had to wait 6 long, agonizing days, and on May 14th we got the pathology results. Alex was diagnosed with Ewing’s Sarcoma, which is very rare to have in your skull, and very rare to have at his age. We still did not know how serious this was yet. We did know that he would need chemotherapy to treat the tumor. We needed to find out if the tumor was localized or metastatic. So, he had more tests done, starting with a CT scan of his chest, a bone scan, and more blood work. Those came back normal, which meant that his tumor was localized, a huge relief! That brings us to May 17th. Alex had his port put in so he could start his chemo. He also had a dual bone marrow biopsy and a spinal tap. Those tests were just to confirm that the cancer did not spread.

  Since all of this has happened Alex has had to undergo many more tests, including CT's, MRI's, x-rays and surgeries. His chest swelled up and he had to have his port removed because there were 2 holes in the line inside of him. They put the new port in on July 16th, but that port only lasted 5 days. That one became infected and he had to have that one removed on July 21st.  He then had a PICC line placed on July 24th to take the place of his port. On July 27th he had to have a G-tube put in. This was because we could not get oral meds into him. His sensory disorder and hypotonia made in nearly impossible. Also he had started to lose weight from not eating. The chemo is so hard on him, yet he still continues to smile! He has gone through so much and he still laughs and plays. He is so strong; he is my inspiration and my hero. He amazes me every day by how incredible he is.

  The best news of all was when he had his MRI done on July 23. It came back that there was no evidence of the tumor!!! That doesn't mean he's in the clear yet, he still has 29 weeks of chemo from that point. It means we are going in the right direction and the chemo has been working.

  We have a long journey ahead, and Alex is going to have to fight to beat the cancer inside of him. We have had our lives turned upside down and thrown into chaos. We have had to live one day at a time, sometimes even minute to minute. We have faced many bumps in the road, but Alex has made it through them all.  I made a page to help post updates on how Alex doing. There have been so many people who have shown so much support and have been praying for Alex, I wanted to have a page for everyone to follow his story. He is truly an inspiration and has a way of making you feel thankful for all of the little things in life! Please visit his page and show your support to little Alex while his is in the battle for his life!

 https://www.facebook.com/AlexandersBattle

 

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