Today was the day

Today was the day I felt the urge not to cry, and decided to start a blog about my son. So where to start.
 On the first saturday of may was like any other day. Except for us it was'nt Our son jake had been looking rather pale. Paler than usual, to anyone who knows jake he has always been fair, but this was different his lips and eyes just were disapearing into his skin. And his temp was soaring up, So we took him to our local A&E. With in minutes we were seen, and within the hour we were moved up stairs. They told us he needed to be seen by a doctor on the peadiatric ward. We were given a private room after he was examined and told he needed to have some bloods taken. As he had a heart mumar, the doctor told us this was due to the fact his heart was working overtime, to keep him alive. After the fitted him a canualar and took the bloods they said it was going to be awhile before his results were back. It only felt like minutes when the nurse came in and told us the doctor needed to talk to us. Thats when it hit, this wasnt an infection. They proceeded to tell us jakes heamoglobin level was 3.9, (normal heamogloin levels should be 13-15) and we were very lucky that we brought him in when we did. They told us we would be transferred to a special childrens hospital were jake would be looked after. That night seemed to have lasted a week. But sunday morning came and we were taken to the childrens hospital, where we greated by a lovely nurse who showed us to our room. A doctor came and spoke to us and told us jake needed a transfusion straight away, so we consented with no questions asked. We sat and we told jake that he needed a special drink to help him feel better, the transfusion took 4 hours. And we watched jake go from white to a slightly pinker colour. The following morning  a lady came to take jakes blood, to do a full blood count. Jake wasnt impressed and cried and fought her as much as he could. ( jake and this lady are now really good friends). Later that day the doctor came back to tell us jake needed another transfusion as his Hb wasnt high enough. So we agreed and another 4 hours later jakes had his second blood transfusion. Then we get the news that jake needs a bone marrow aspiration and biopsy as his white cells and plateletes have dropped. We were allowed home that wednesday afternoon, but only untill thursay morning and had to be back for his operation. The operation its self took 45 minutes, but seemed like hours. When we thought we were going to have answers we were told we had to wait 2 weeks. The weeks came and went, and still no news and in the mean time jakes Hb levels were still droping so he was still having to have blood transfusions. Which jake has now named his orange juice. At every appointment they told us little bits about what they were looking for, And then they told us they were checking for a condition called Diamond Blackfan Aneima and that it was very very rare so it was unlikely, because it usually comes with disformaties but jake does'nt have any, but they just wanted to rule it out. So we certain jake was going to be fine, And then thats when they tell you the 1 thing you don't as parent want to hear, your son has diamond blackfan aniema a condition basically  were the bone marrow does'nt produce red blood cells, So okay I tell the doctor, so how do do cure it, We don't there is'nt a cure.
The hardest words in the world to hear, a moment where it takes your breath away and you can't breath everything around you vanishes. And your whole life has just changed. So where have been since this? more blood transfusions yes. And now his blood has gone up with the transfusions they said it was the best time to try jake on the Prednisolone at 20mg which is extremely high, but if it works it will stimulate the bone marrow and produce red cells for him. Jake has still had transfusions while on the treatment, but were hopeful. If it doesnt work, then it will blood transfusion therapy all the time. They have explained that the treatment may not work or will just stop working, and then we will be back on transfusion therapy. And the we will be looking for a donor for a bone marrow transplant. We take everyday as it comes and watch jake as he smiles and how he just gets on with it. I will post with updates as I can, and on the 17th august we will know if the prednisolone is working. x I hope you will follow us as jakes journey continues, through the good times and the bad. xoxo