One year ago right now Lily was getting her 3rd blood transfusion and getting ready for her first bone marrow biopsy. I remember everything so clearly, but the main thing I remember is just how much happier and hyper lily was. After getting some fluid and blood she perked right up and was laughing and playing. Its the happiest and healthiest that she looked in a while. We were laughing and playing all morning in our room still waiting to hear what was really wrong. Next we would go in to the PICU for the biopsy and Dr. Camilo would be there. He would looked at me and asked me what I knew. At that point it was just that she was anemic and had immature blood cells but I didn't know what that meant exactly.I was sitting on the hospital bed with lily on the bed between my legs, my arms wrapped around her, and my head resting on her head, and he looked right at me and said "Your daughter has leukemia. We don't know exactly which kind until the results for the biopsy comes back but we do know that it is leukemia." I don't remember details after that. I know he left the room for a minute, I think. I do remember kissing Lily's head and just saying "why did it have to be that?" "Anything but that, Why?!" I just kissed her head over and over. Then they all came back in and said that they were ready to start the procedure. I feel like I just flew back to our room. As I'm walking back in 4636 the phone rings and Its Jami. I tell her, "She has it, She has leukemia. She really has it." Then with out hesitation she says "I'm coming. I'm coming down there." I was so relieved I didn't even have the strength to argue. After that things get blurry again. I think I mostly would just lay in bed with Lily just forcing her in my arms every second.
Now that its been a year life is so different! Now procedures like this are out patient, and routine. Low blood counts are always scary but they are somewhat anticipated and expected. Chemo is taken everyday which means a daily 3 hour fast for Lily. She is doing so well but still no preschool or jumping on the trampoline. We wear masks everywhere we go, and we hardly complain about it. Our hair was lost, but now is found!, and she has the cutest pixie cut hairstyle that is to die for...(too soon?) We are almost 4 now and acting 16. We are starting counseling and we are all working to get back to happy healthy place. Things are getting easier, but we are still fighting. I never thought the year mark would ever come, but we are living it, which means to me that we have overcome the first hurdle, but we wont stop fighting until they are all defeated.
Today I have just tried to keep myself busy. A year ago today lily was admitted into the hospital with in 4 hours of initially seeing the Dr.. I will never forget the startled look on his face as he entered the room and saw Lilys pale complexion for the first time. Still looking back I can't believe I let her get so pale without any concern. About this time we were headed into the hospital for her second blood test in a row as the first was so off of normal they thought that they had a contaminated sample, and by 8:30 we were headed for a direct admit into room 4636 (which we have come to realize is like the official chill spot for all cancer kids, as I don't think I know of one kid that has been admitted that hasn't stayed in that room) 🙂 I'm remembering how calm I was but still so scared and worried. Now it's been a year, and I'm still scared, and worried, but the difference this year is I can actually see that light at the end of the tunnel. I see the end coming closer and I can almost imagine what life will be like after all of this. So much has changed in the last year. Nothing is like it was. We are pushing forward and determined to live a fuller life this year as health allows. Keep praying and keep supporting. Our journey isn't even half over, but the rough seas should be over. And we are hoping to just cruise by and enjoy the view
One year ago right now Lily was getting her 3rd blood transfusion and getting ready for her first bone marrow biopsy. I remember everything so clearly, but the main thing I remember is just how much happier and hyper lily was. After getting some fluid and blood she perked right up and was laughing and playing. Its the happiest and healthiest that she looked in a while. We were laughing and playing all morning in our room still waiting to hear what was really wrong. Next we would go in to the PICU for the biopsy and Dr. Camilo would be there. He would looked at me and asked me what I knew. At that point it was just that she was anemic and had immature blood cells but I didn't know what that meant exactly.I was sitting on the hospital bed with lily on the bed between my legs, my arms wrapped around her, and my head resting on her head, and he looked right at me and said "Your daughter has leukemia. We don't know exactly which kind until the results for the biopsy comes back but we do know that it is leukemia." I don't remember details after that. I know he left the room for a minute, I think. I do remember kissing Lily's head and just saying "why did it have to be that?" "Anything but that, Why?!" I just kissed her head over and over. Then they all came back in and said that they were ready to start the procedure. I feel like I just flew back to our room. As I'm walking back in 4636 the phone rings and Its Jami. I tell her, "She has it, She has leukemia. She really has it." Then with out hesitation she says "I'm coming. I'm coming down there." I was so relieved I didn't even have the strength to argue. After that things get blurry again. I think I mostly would just lay in bed with Lily just forcing her in my arms every second. 
Now that its been a year life is so different! Now procedures like this are out patient, and routine. Low blood counts are always scary but they are somewhat anticipated and expected. Chemo is taken everyday which means a daily 3 hour fast for Lily. She is doing so well but still no preschool or jumping on the trampoline. We wear masks everywhere we go, and we hardly complain about it. Our hair was lost, but now is found!, and she has the cutest pixie cut hairstyle that is to die for...(too soon?) We are almost 4 now and acting 16. We are starting counseling and we are all working to get back to happy healthy place. Things are getting easier, but we are still fighting. I never thought the year mark would ever come, but we are living it, which means to me that we have overcome the first hurdle, but we wont stop fighting until they are all defeated.
