Wednesday, June 8, 2011

Jackson's Story

On the day after Christmas we were helping Jackson's cousin move, and he was accidentally bonked in the eye with a 2x4. Jackson only cried for about 20 seconds, then rubbed his eye and was off playing again. Later that day Jackson started complaining about seeing double. I wasn't too concerned at first, but as the week went on he still complained about seeing double so I called the eye doctor and made an appointment for Jackson to be seen.

January 3, 2011 was the first time Jackson was seen by a doctor for his double vision. The doctor did a complete eye exam, but saw nothing wrong with Jackson's eyes, and told me that ifs it didn't get better by Valentines Day that I should come back into the office for another visit. Within 2 weeks Jackson's double vision got worse, and his eye started to move in towards his nose so we went back to the doctor. One doctor referred us to another doctor and that doctor sent us in for Jackson's first MRI.

January 28th Jackson's first MRI scan showed nothing significant to worry about, so we did what the doctor recommended and took the "wait and see" approach to treating Jackson's sixth nerve palsy. We waited for 5 months. We patched Jackson's good eye to help with his vision. We got him glasses, and we got a prism to help even more with his vision. Still, nothing seemed to help his sixth nerve palsy, and instead of staying the same, it got worse. It was finally in May that the doctor recommended we get a 2nd MRI for Jackson.

The 2nd MRI showed that Jackson had a tumor on his clivus bone which is right at his brain stem. The tumor was pushing on his sixth optic nerve causing the palsy. At the word "tumor" our world stopped turning.

Jackson went in for a Transphenoidal Biopsy (brain surgery through his nose) and they took a biopsy sample of Jackson's tumor. Eight long days later we heard the pathology report of Jackson's tumor. He had cancer.

June 17, 2011 we found out that Jackson has an extremely aggressive form of cancer called AT/RT or Atypical Teratoid Rhabdoid Tumor. This tumor is found mostly in infants and children, and the fact that Jackson has it at the age of 5 is extremely rare. Also, the location that Jackson's tumor is in, is also extremely rare and a very difficult spot to treat.

Jackson just finished his 2nd round of chemo in the "Butt Kicker Protocol" as his Oncologist calls it. He is currently going through radiation treatments, and after he finishes 30 treatments he will endure 3 rounds of Bone Marrow Transplant- where he will receive his own bone marrow back. This road has been far more difficult than any of us could have ever imagined, but along the road we have been able to find beauty in simple things.

We now know that getting hit in the eye with a 2x4 had absolutely nothing to do with having a tumor, but because of that event, we were able to see Jackson's symptoms much earlier than we would have otherwise.

We hope and pray for the best. We are doing everything we can possibly do to help Jackson beat this cancer, and now we have to leave the rest up to a higher power. We have great faith the our prayers have already been answered, and that the Lord is helping us through this trial.

Thank you for your love and support, and for reading all about Jackson's journey.

1 comment:

  1. Found your blog through Emmett's. Our son also had AT/RT at a late age. He was diagnosed when he was nearly 3 and 1/2 years old. His was in the left frontal lobe, with entire spread to spine. He has been off treatment for 3 years tomorrow and is now 7 years old. I will pray that your sweet Jackson remains cancer free. You may visit our blog at if you'd like.

    God bless you!

    Stacie Smith


Thank you for taking time to comment. I read each and every comment to Jackson and they brighten his spirits. He loves that you are supporting him through reading his blog.