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.