February 15, 2010, our blissful world as we knew it changed forever. Our 2 and a half- year-old son Jackson was diagnosed with a brain tumor, and the following day we would learn that it was inoperable. It was all I could do to pick myself up off the ground and be the best mother my sick son deserved.
I am here to tell you that you will find a "new normal." And despite life never being the same as before, there will be many more moments filled with laughter, smiles, and great joy. Looking back, I would change my son's diagnosis in a millisecond if I could, but I would never change the life lessons we learned in those following months. We quickly learned the true value of life, the joys in the simple things, and how to never take another day together as a family for granted.
To get through the tough days, never give up believing. Put on your happy face in front of your child because the face of optimism, hope, and happiness can put them at ease. We are true believers in a high morale making a better outcome in this fight. I am not saying there were not moments of sadness and despair, but overall we made it our goal to surround our son with unwavering love, laughter, and happiness. It was at night when Jackson was sleeping that I would hide my head in my pillow and let all the day's emotions overwhelm me. Some days it was all I had in me to just get through the day, and crying my eyes out made it possible for me to put my best foot forward again the next day.
I will not for one second tell you this is not going to be hard. It is possibly the hardest thing you will ever go through in your lifetime. I still ask the question "why?" and have anger towards this happening to my young child. I feel he was robbed of that blissful, carefree childhood he deserved. Yet, I have come to realize those are questions and feelings I will never have answers to. I will forever be angry in a sense and always ask "why?" It is not fair, but we have learned that is life, and we are thankful for every extra day we get to spend with Jackson.
Initially, Jackson was diagnosed with a terminal tumor on his brain stem and we were given a rough timeline of 18 months of survival. For the next month after diagnosis, we lived this nightmare, but we never ever let our hope waver. We knew we would be ok, regardless of the outcome because that is what Jackson would want. We always remained hopeful, and holding on to that belief came true when our son's tumor responded favorably to chemotherapy treatment. We were told it was possible he had a very rare location for a primitive neuroectodermal tumor (PNET). We chose to continue with the next five high-dose chemotherapy rounds before radiation. His tumor continued to shrink and remain stable.
Chemotherapy was a very difficult time for Jackson and our family, but worth every step. Jackson spent more days in the hospital than at home. I had to take a leave of absence from work, my husband missed countless days also, and we sadly missed spending time with our other son. It was so difficult to be torn apart as a close-knit family of four. We took shifts at the hospital so we could each get a break to run home and see our other son, Mason, for a few hours each day. All the while, our minds were constantly on Jackson and his well-being. Chemotherapy made Jackson so sick. By the fifth round he stopped eating, threw up daily, lost many pounds, and was put on IV fluids nightly at home. There were days when he wouldn't walk at all. As a parent this was so difficult to see. I desperately wanted him to be playing outside in the warm summer sun like every other three-year-old.
Jackson is still battling this nasty fight with a 2 cm. tumor on his brain stem. Yes, 2 cm. is what threatens my child's life! It's unbelievable, but he is winning this fight. We are still researching our radiation options, which is scheduled to begin in roughly six weeks. We want to make the best decision for Jackson in ensuring he is cured and has little long-term effects from treatment. It is likely we will relocate for six weeks so Jackson can receive proton beam therapy, but we are still sorting out our options. This would be the ultimate test for us as a family and especially Jackson if we had to move for a little while.
I hope from hearing our story, you see that despite the life-altering diagnosis of brain cancer for our son, ultimately our lives became richer and more hopeful. I have become a total advocate for my child, fighting this fight right alongside of him. More times than a couple, I questioned the doctors, nurses, and hospital staff to ensure Jack receives the best care possible. Make sure you speak when your child can not, to make sure they are treated properly and get the best care they deserve. Jackson continues to make strides in the right direction. Although he has a long way to go, he is winning this fight, and teaching us more lessons about life, love, and true happiness. We have become better friends, parents, and individuals. Our lives have been changed forever and only become richer. Remain hopeful and never stop believing. Pray for nothing short of a miracle... miracles happen every day. Jackson may not be cured just yet, but the fact that he has made it this far is a miracle in itself. We are forever grateful for the amazing team of doctors at Children's National that gave our son a chance in this fight. Without them, I am sure our days would not be as bright and our future less hopeful. From the bottom of our hearts, thank you!
This letter wouldn't be perfect if I didn't sign-off like Jackson would. "Rock the RED!!" just like the Washington Capitals, his favorite hockey team.
Kristin, Jackson's mother