Before all of this I knew very little about the cancer world. In the beginning, it felt like I was just in a horrible nightmare just waiting to wake up. They hospitalized Ali for the initial treatment which took about 10 days. During those 10 days it seemed as though we met a different doctor every couple of hours. They have a huge team at Primary Children's so I understand now why we were meeting everyone but it was overwhelming at the time. They all speak to you as if you understand medical terminology. Before all of this, I graduated medical assisting school and had studied medical terms so I was trying my hardest to search my brain as fast as I could for some sort of connection in understanding what these doctors were talking about. They gave us a huge binder that had information about leukemia, chemotherapy, side effects and so on. At the time I could only handle reading a few pages before my brain shut down and I was back into the numb state of denial. I had the nurses write everything I needed to do for Ali down so I could just go down the list each day until it became habit. She would enter a new phase of treatment every two months and a new routine would have to be established each time. The months passed and cancer became a way of life.
The beginning of January came and we had finally reached what the doctors call the maintenance phase. They call it that because for the next year and a half of treatment, most all the chemo is given at home and a lot of the medications all stay the same. We have been looking forward to this phase! We were told that Ali would start feeling more like herself and that she could finally participate in activities with other kids her age. The type of chemo she is getting would not make her hair fall out anymore so her hair is now starting to grow in! All things positive, right?? So why am I so emotional?? As we have entered into maintenance, Ali has had more problems than I had expected. She gets more nauseous than she ever has been. She has developed neuropathy in her legs (one of the side effects from having chemo) making it unbearable for her to walk at times. This last blood draw, her results came back with high results on her liver function. They are suppose to be around 10-25 for normal results and they are coming in at 450! What does that mean?? As far as I understand, her liver is having trouble processing the chemo. They are going to stop chemo for a few days and then retest hoping that her lab results will look better in a week.
As this year has gone by I feel more educated about cancer but I still feel like I don't know enough. I get frustrated that I can't read or understand everything on the lab test results and that I have to wait for doctors to explain them to me. I get frustrated in the unknown. I guess I would rather worry about nothing than get hit with something and not be prepared for it.
The other night I opened the big binder that we got in the beginning when we were in the hospital. As I opened it I started searching the side effects. Immediately I started feeling shaky and could barely get through it. For some reason I had told myself when she was diagnosed that the next 2 1/2 years would probably be really hard, but if I could get through that, she would be healthy and there would be smooth sailing. When I hear of abnormal liver function results and I add medicine to her list for neuropathy, I am hit in the face with reality. I do not know if she will be ok. I do not know what kind of damage this chemo that is so essential to her now will do to her later. I do not know what will happen!
I guess all I can do is have faith. Have faith that things will be ok. Have faith and hold on to what I do know. I know that God has a plan for us all. I know that we all have chosen to come to this Earth, to live our life and become the best people we can be. I know that there is a Savior who loves us and will help us through anything in our lives. I know that He will comfort us and share our burdens. I am grateful for my trials because they help bring me closer to Him. I know He knows me and will help our whole family get through this! I am amazed at Ali and how well she handles life. She never questions anything or ever has a bad thought. She is amazing! I am so proud of her and the person she is. She is so strong and loving. I love that she will give you a hug even if she doesn't know you. She is so kind. I am so grateful to know her and to be able to be her mom!
One positive thing that has happened is that she has been asked to be the Girl of the Year for the Leukemia Lymphoma Society. This means that her story and picture will be shared by many in hopes of raising money to find a cure! She is so excited to be a part of it and to help in some way. She is already thinking of ideas to raise money as well! Her plan is to have a hot chocolate stand and give the money she raises to LLS. How is she so sweet at just 5 years old?!?
My beautiful girl!!!
Being silly!
One of her favorite blankies!
Ali and the Boy of the Year (I think she may have a crush on him!)
Her cuddle buddy!
Her hair is growing!!!
