Allot has happened since I wrote last. Kelvin continued to improve without any treatment. The swelling on his head went down which was a miracle but I noticed he was bleeding, as I changed his diaper I noticed that his urine was full of blood. I could not believe this, he was conscience talking to me asking me to change the TV to Sponge Bob but yet he was bleeding to death. I could not do nothing so I called CHLA and spoke to the oncologist on call and he felt that for Kelvin's comfort that we should transfuse platelets. Frank was totally against it, he felt that we should let Kelvin alone. I just could not sit and do nothing and watch my son bleed to death, it was not the cancer that would take him, he would die from blood loss. I contacted the hospice nurses who wanted to help me take Kelvin luckily my sister in law showed up and convinced Frank that we could not sit and do nothing. I know that Frank is tired of watching Kelvin suffer but I feel that he would suffer more if he was bleeding to death. We took him to the hospital and transfused him, when the got the blood results they saw that Kelvin's hemoglobin was 4.3 which is so low they felt this was causing his heart rate to be racing. They started to transfuse him with blood he was almost done only need less than a 1/4 of the bag when Kelvin respiration's were very low and they were so afraid he would pass there. I told them to disconnect him and we brought him home. A few hours later he began to speak and kissed me on the cheek and told me that he loved me. This was all I needed to feel that I could go on. A few hours later he began to ramble, and would repeat the same things over and over. This lasted for several hours, I could tell he was tired and spoke to the nurse and we gave him some medication to help him relax. He slept and started talking but the talking then turned into rambling. You could ask him questions and he would answer but go back to his rambling. It is so heart breaking to see him this way. Today he had been rambling but still continued to be aware until about 1:00pm when we noticed he no longer comprehends. I am so heart broken because my baby is leaving me and no longer responds to my kiss and to my touch. Frank is so angry, so very angry. He says that if we would not have done the things we have done, hydrate him, give him Tylenol for his fevers and transfuse him that Kelvin would not be suffering. He is angry because I would not let my little boy die of starvation, blood loss or convulsions due to high fevers. I love my husband but he is so angry at it is so difficult to feel hated especially since I am hurting so much for my little angel. I know it will pass and I pray that he will one day get over his anger. My son was suppose to die 12 days ago and is here with us still. I thank God for this and I know any other mother would have done what I did for their child.
Full of sadness,
P.S. I ask you to please continue to pray for my angel and to please pray that our family does not fall apart because of this tragedy, we have suffered enough!