This picture makes my heart happy! Farewell ICS and farewell to your giant bags of chemo!
We hit a HUGE milestone today. Today Skyler finished up his very last high dose chemo and is officially in maintenance! We have waited over a year to say these words. Finally there is a light at the end of the tunnel. For Skylers type of Leukemia, maintenance is usually hit by the sixth month but we all know that Skyler doesnt follow the rule book on how to be sick. It may have taken us over a year to get here but we are here and thats all that matters. Maintenance means the end of the harsh chemo and the beginning of a much easier course of treatment. For the next three years Skyler will take oral chemo at home everyday and will only have to go into clinic once a month for chemo through his line. Also normally he would get his back poke once every three months but since he is high risk, meaning he presented with a very high white count when he was diagnosed, he will get his back pokes every time he goes in but has the third month off. They also try and keep his ANC from getting too low so he will be able to start doing more things and live somewhat of a more "normal" life. What is normal anymore anyway? I dont think our lives will ever be the same "normal" it once was. We will just have to find our new normal because we will still be doing this for the next three years. I cant believe that when we are finally done with treatment it will be over 4 years. Skyler will be eight years old...crazy.
I am so excited for Skyler and he is so excited too. On the way home he kept singing "Skyler is in maintenance, Skyler is in maintenance!" It was so cute and I may have gotten a little teary eyed. Even though Skyler is in maintenance now we still have to be careful because something as little as a cold can turn into something dangerous for him. But since he isnt getting such harsh chemo anymore he should start feeling so much better and get stronger everyday. Right now we have a two week break from all chemo before he goes into clinic. Im very much looking forward to this time off. I still cant believe that this is real and we are finally here. Its been such a long hard road for Skyler so far and I hope maintenance treats him well. He definitely deserves it. He is still having fevers that no one can figure out an answer to but I will post more about that later, for today is a day of celebration. I just cant say this enough SKYLER I AM THE LUCKIEST MOMMY IN THE WORLD TO HAVE SUCH AN AMAZING, STRONG, COURAGEOUS, SWEET, FUNNY AND PERFECT SON AS YOU. YOU ARE MY LIGHT, MY WORLD AND I AM SO PROUD OF YOU. I LOVE YOU TO INFINITY AND BEYOND!
On the way out of the parking garage at Primarys when we were headed home I heard Skyler singing this so I turned my phone on. So cute. Also at the end of the video you can see a little of why Sky needs hearing aids...he says what a million times to everything I say. Its dark at the beginning because we were driving out of the garage