Amor Fati

Amor Fati: the love of one's fate. So easy to say, is that not so? At the same time though, I will say that we all, as beings, have an inevitable course in life that we do not choose to be born in. As we grow, time moves, we experience things such as childhood, adolescence, pre-adulthood (when we think we are adults, but are just of legal age to buy smokes). The more that time passes by, the more that we experience new things, different things. Sometimes we cannot afford our cost of living as much as we wish we could. We get dumped by our long term spouse, get fired, find out that a loved one has become critically ill, or has passed away. As much as we want to crawl into a corner for the rest of our lives and sulk over our problems, we must realize that time does not stop for us, but we must indeed try the hardest to do the opposite.

My little man, got diagnosed with cancer, twice, almost left us quite a few times, but he stayed. I would get so upset, angry, sad, frustrated, knowing that my son was suffering physically and emotionally. Someone then made the comment to me that "No matter what happens, it will be okay." I did not want to believe those words, I did not want to see my son go under any circumstance. Again and again, the doctors would put us in more and more of a scare of losing him, I was tired of always feeling emotionally drained, I never gave up in doing my best to keep his hopes up as much as I could though. Eventually, I came to the point that I did realize that no matter what happens, it will be okay. I started appreciating every second I had with him even more so than before. Like they say, hoping for the best, but expecting the worst. I stopped being selfish and trying to hold on to him without letting go. I started learning how to appreciate all things that happened around me, even people, family, friends. A big weight lifted off my chest, and my son also started doing so much better. Words couldn't even come close to explaining what life started meaning to me and how thankful I am. I cannot predict the future, but all I can think to say is that I do love all things around me, and I can accept and learn to love life regardless of what comes my way.

He made his arrival

They discharged my son yesterday, and it went well. He finished his 21 day course of antibiotics, and I am very happy that he has come. He hasn't been feeling good, I will be taking him tomorrow to the docs. I have been so emotional and irritated the last few weeks, it seems that everything is just retrogressing and I feel like I am going to go insane. I hope that he won't have to be hospitalized again.

Looking back at the last ten months, what happened?

On December 17, 2009, my son relapsed with ALL (Acute Lymphoblastic Leukemia). Once a patient relapses, the cancer is treated with four rounds of chemotherapy then proceed onto giving a bone marrow transplant. After 15 gruesome days of anxiety hoping that he would respond, the chemo fought off the leukemia. Boy were we happy as ever, we just were not prepared nor did we know what lied ahead of us. Steroids, high dose chemotherapies, antibiotics, antifungals, everything would bring our little boy's spirit down. As much as I wanted, I couldn't go on leave at work,  I couldn't afford it. After a month of being at the hospital, they finally let him go home for about three days then back for another month for another round of chemotherapy. While this went on, the search had started for a bone marrow donor it took about a solid four months to find a donor. Once the rounds of chemotherapy, we were now ready to get prepared for the bone marrow transplant. We thought that the last few months were a bit rough, but the true rough didn't kick in until the transplant days. The workup for the transplant required high dose chemo, and TBI (total body irradiation) on the body to kill of his cells to introduce the new cells and horse antigens(to help the body accept things more smoothly). We didn't sleep, or eat, til the evening and woke up early to do the radiation, chemo, all over again. To say that the seven days previous to the transplant were exhausting, frustrating and emotional, would be an understatement. We truly saw his body and spirits breaking down slowly. I had never seen him vomit due to chemotherapy until those days.  April 20th was the day of the transplant, it went so smoothly, all the nurses came in to the room to sing him the "transplant song", family came to visit and see him while they could. The doctors mentioned to us that the bone marrow usually engrafts within 10-14 days after the transplant has been given. We waited patiently for his blood counts to start coming in on their own. After about 10 days, he had to get sent up to the intensive care unit, his blood pressure was very low and couldn't be controlled. Right after going back to the transplant unit, I got a throat infection and couldn't be with him. Being home for a couple days made me feel like I was going to go insane, his blood counts had not come in yet and it was about time that they should have and I couldn't be up there. So I got a hold of his doctor about to ask a question regarding my concern when she tells me that she would like to do a bone marrow biopsy to see what is going on. Knowing that she was on top of it already was somewhat gut-wrenching, I just didn't like the way it was sounding. I tried even harder to keep him happy and distracted at the hospital waiting for something, but nothing. After waiting for the biopsy, the doctor called his father and I for conference, that is when it was confirmed for me that there was no good news, his transplant failed, and another transplant must be performed with a different donor. Higher precautions had to be taken as soon as possible. After three weeks of being as patient as we could with this, a donor was found. On June 4th he received his second transplant.  Ten days into the transplant...he finally engrafted! We were so happy! Everything started getting better little by little. On July 1st, the doctors let us go home under the conditions that we came everyday for infusions. I didn't care, my son needed to get out of this depression of being stuck in the hospital for almost three months. The day came to go home, he didn't even believe me when I told him "lets go home buddy". He stared at me, when I started getting him dressed in his own clothes and did not know how to react. After a two hour drive, we finally got home, he helped me cook dinner that night, we ate grilled chicken, and tomato soup with crackers. It has been the longest 10 months of my whole life.

Sitting here thinking....oh! How I hate thinking.

I am sitting here in the hospital room next to my son taking turns playing the Wii. I am very glad that he is doing so much better, but man today I just want to get out of here. It is one of those days that I feel very irritated, very highly irritated. I feel like he is stuck in this cycle here at the hospital and will never get out of it, it is 97 days today since his second transplant. I know it is still soon  after, but I feel like it will never end. He should have been off the immunosuppresants, but cannot be due to the gvhd attacking his gut. He cannot get his days cut down for clinic because the antifungal that he needs has to be three times a week, the other antifungal that is an option, well he gets weird side effects. Ay! I will be feeling less bitchy next week. I am truly thankful for the fact that he is getting well. It is a slow process, but that is what patience is for.