Okay, so for those of you in the know, it is no surprise that it has taken me this long to get back to the page, since you already know that these past few months have been CRAAAAAZY!!! To say the least...For those of you not in the know, slightly in the know but looking for me to fill you in, or heard it all but don't mind hearing it again, here it is.
My mom's birthday was December 1. We went out with my grandma and my great aunt to celebrate, Miss Boots was well enough to tag along. We met at a restaurant that was a halfway point for all involved, in a mini mall in West Covina. We had a pleasant meal, and it was time to strap Miss Boots into her car seat. Now, since Miss Boots had been in maintenance for her ALL treatment for several months at this point, she had a sudden growth spurt and I had been fighting and struggling with her car seat for a few weeks since she no longer fit. My mom had promised to buy her a booster seat for Christmas, and since we were in a mini mall and a Target was within a short distance, my mother suggested we drive around to the Target and shop for a booster seat right then and there. We drove around, settled Miss Boots into a shopping cart, and proceeded to walk towards the entrance when my phone rang. I recognized the number as being the hospital where Sarah receives her treatment, so I answered it, thinking maybe they were going to change her appointment, or something else just as innocent. When I recognized her doctor and the tone of his voice on the other end of the line, I stopped dead in my tracks, still in the parking lot. This being a cold and windy evening, my mom took Sarah inside the store. The doctor informed me that Sarah had contracted AML (Acute Myeloid Leukemia), a secondary cancer which is much more aggressive and has a much lower survival rate, from the treatment for her ALL. He said it is rare that this happens, but that it does happen, and that it is treatable, but that her chances of survival are around 50%. He wanted us to come in the next day to be admitted to the hospital for treatment. I asked him how long, he said to plan for several weeks. I stood there for a second after he hung up, shocked, and in tears. I allowed myself a moment to cry, not wanting to frighten Sarah or my mother when I entered the store. After a minute, I entered the store and found my mother and daughter. I explained to my mother as calmly and as best I could what the doctor had said and what he wanted us to do, so we spent the rest of the shopping trip shopping not only for a booster seat, but for necessities for the hospital as well. My mother kept having to ask if I needed this or that, I was still in such a state of shock, I couldn't think about mundane things like cotton balls and q-tips. All I could think about was my daughter, how much I love her, how unfair it all is. She was supposed to be done in January. And somewhere within me, I had known. I had known, and I had dismissed it as pessimism, and banished the thought. Somewhere, whenever someone would mention the closure of her treatment, or my impending return to work, I felt uneasy, it didn't sit right with me, it didn't ring true that she would really be done, that this would be over in just a matter of months. It didn't feel over to me, and sure enough, here was the call from the doctor telling me that not only was it not over, it was about to get a hell of a lot more complicated. I had a 50/50 shot of keeping my daughter. She was not even four yet, and she has a fifty-fifty shot at surviving.
We completed our shopping trip and headed for home, so that I could pack myself and my daughter up in preparation for a month-long hospital stay. The next morning we checked in to the hospital, and chemo began immediately. Over a ten day course, Sarah received three different chemo drugs, three different antibiotics when the drugs caused fever and diarrhea, the diarrhea became worse with the antibiotics and it got to the point where every single diaper was full of diarrhea and we had to give her pain medication before diaper changes. Sarah spent her fourth birthday in the hospital as well as Christmas and New Year's. A CT scan revealed that Sarah had developed a bacterial infection called pseudopneumosis in her lungs that poses as pneumonia. More antibiotics which she HATES and fights with every dose. At the beginning of this month, we were granted a four day reprieve, and this past Wednesday, Sarah went back into the hospital for round 2 of her aggressive AML treatment. I was there for two days, then a cold I had been fighting got the better of me and I was forced to ask my mother to relieve me as my husband is also ill. I am currently doing everything I can to beat this cold so that I can get back to my daughter and help her through this second course. My mom reports that four days into chemo, she currently has no fevers and no diarrhea, and is eating decently, so that is a prayer answered in my book. She is still fighting her meds, but a session with a child life specialist revealed that Sarah does this because she is scared, and doesn't feel in control of much else right now. She is walking at a hobble right now, so she is being seen by a physical therapist, an occupational therapist for her writing skills, a speech therapist is coming Monday, and pain management and psychology are working closely with her. She is well covered and well taken care of. But so many people can look threatening to a small child, even if they are trying to help. I have tried so hard over the past two years to keep her feeling as normal as I possibly can, so all of these people coming in is like admitting there is something wrong with her. A lot to ask of a four year old. So we are fighting, together, to beat this monster called cancer that has tried to claim my baby not once but twice now. And we will continue fighting. It has been a crazy year, and my life has changed dramatically. I have lost people that mean a lot to me in the process. But my daughter has always been my first priority, and she is still here. She is still here, and the fact that she has so much energy to fight me, her grandmother, and her nurses about her medicine gives me hope.
It has been a year since I began this blog, as part of my New Year's Resolution promises to the committee. The committee has since fallen apart, my life has since fallen apart, so I decided that this year, I am not going to make resolutions that I am not going to even remember two weeks later. I am instead going to simply charge ahead and try to live this year with as much hope, love and gratitude as I can. We don't know how much time Sarah has. I don't know how much longer I get to be Sarah's mother. We could have a day, a week, a month, a year, a decade, a lifetime. We just don't know. That is in God's hands, and we just don't know how long we get. Even after the transplant, there is a chance it might not work. My life has become all about time. I am not thinking about the year ahead, I am thinking about now. Right now, this moment. This is what I have in my hand, this moment. I cannot think about the possibilities right now, the what-ifs, I will drive myself insane. All I have is right now, and right now, my daughter is alive. My daughter is fighting. Right now, my daughter is kicking cancer's ass. So if I resolve to do anything this year, it's to live each day like it's our last, because it very well could be. If this whole thing doesn't go the way we all hope and pray it will, I want Sarah to have had as full a life as I was able to give her. I want to know that I did the best I could by my daughter, that I was the best mother I could have been. I want to know that, either way. When I am planning her party to celebrate a year from transplant, and her high school graduation, her college graduation, her wedding, her baby shower, her grandchild's baby shower, I need to know that we lived every day loving, living, and appreciating each other as best as we know how. The rest will come unbidden and we will take it as it comes.