Just a quick update, we did'nt get far into jakes week off, but we made a good start we mananged to go swimming saturday which jake loved. But looked so washed out after. And then sunday he seemed to really be tired and extremley pale, monday came round and he looked like he was auditioning for casper, so took jake for a check up at the hospital. And his blood had dropped again by 1.2 in 5 days of last being there. So my poor little man has had to have another transfusion.
I just hope his blood goes up enough for his appointent next week, so he doesnt have to have another transfusion then too.
His transfusion went went well enough, except he cried alot throughout it, as he does'nt understand why he has to have his orange juice. But he seems alot brighter this morning so fingers crossed. I have 1 brave little man, and he keeps is mummy strong. x
Interesting fact of the week Jake has had the equilevent in blood transfuions to a large bottle of pop.
Bee Happy
Tuesday 23 August 2011
Friday 19 August 2011
Appointment update for jakey
Hi all, Jake had his appointmet on wednesday, and I wish I had better news, but I dont. It seems like the drugs are'nt working for him, As his blood has dropped by 1.3 this time. We were so hopeful as they had gone up by 0.2 last time. And I know it wasnt much but it gave us the hope that they were working, and the hope it would make jakes life easier for him. But seems not to be the case. Well for the next 2 weeks jake will stay on the high 20mg dose of predisolone and then they will start to wean him off by reducing the doseage, each time. Jake will need another transfusion when we go back for his appointment and they will take more bloods, and do more tests to see if there is anything else under lying. But for jake his next step is having to go on blood transfusion therapy, which is going to be long hard and gruling for him. He hates having to have the canular fitted, for his orange juice (blood), he hates having to sit there for hours after for it to be done, and all the waiting around. But how do you explain to a 4 year old, that this your life. The hardest thing is the hoping, but we still do it, and I hope that when we go back ,some miracle has happened and the meds work. I know they try and prepare us for the following week to come, and what must be done, And they are amazing at there job. But without the hope what else do we have. Well they have given jake next week off for some well earned hospital free time, so I will update soon with more on jakeys journey, and his progress soon. And will add as much information on blood transfusion therapy and what it all means for him, when he starts on the 31st August. Thank you all for your support.
In the words of Jakey
Bee Happy
In the words of Jakey
Bee Happy
Friday 12 August 2011
A little information on Diamond Blackfan Amiema & Jakey
Diamond Blackfan Anemia, affects between 600-700 people in the whole world and is named after the Dr Diamond and Dr. Blackfan in 1935. The condition is a congential disease or can be caused by mutation in the gene encoding ribosomal protien S19 on chromosome 19 or chromosome 8. Most cases of DBA occur randomly. 10% are autosomal dominant or (less frequently) autosomal recessive.
Patients with DBA are at a higher risk rate of Leukemia and hemolytic malignanicies than that of the general population.
Most patients with DBA are diagnoised by their fisrt birthday. A nd in rare cases this can go undiagnoised untill it manifestes itself in early childhood.
DBA is where no or little red blood cells are produced by the bone marrow. The symptoms are hard to diagnosis due to the rare illness, Children will appear pale, fatigue, irritability, and even fainting. All common signs of everyday Anemia.
What have written is in no way to be used for medical reference.
Jake still has a irregular heartbeat due to the heart trying to keep thr oxygen moving throughout his body, but this is not as bad or as life threatening as it was when first admitted, And he has great doctors and nurses who are always checking him every week we are there.
Jake has been started on his first course of treatment, Which is predisolone at 20mg per day they started jake on this when his levels reached 8, as they suggested this would be the best time to try him, as he his Hb drops so quickly, and they didnt think he would reach 10. He has now been on the course for 5 weeks and as of yet it hasnt made any sign of working, and he has still had to have a transfusion, to push his levels up. But to say at his last appointment it had gone up by 0.2, which his specialist said wasnt enough to say it was working, to me Im holding onto hope that it is. But this wednesday coming the 17th we will know 1 way ot the other, if its working then we have a long wait to see if he can substain on it, and then battle all the side effects. Jake is having to have weekly gulcose tests to check for diabetes as this is a side effect to the drug. His levels go and down, but so far so good. And he is also piling the weight on, he is getting what you would say a moon face. x
Jake has to weighed and measured frequently as another side effect is weight gain and can stunt maturity growth. Another side effect jake has but I would'nt say serious is hungar, he is hungry all the time, we are lucky that jake likes healthier food he isnt as interested in sweet things, except skittles but only the purple ones. x
So I hope this helps a little to understand a little more about Diamond Blackfan Aniema and alittle more about Jake. I will add updates and more information as we get it. I also think this is helping me understand more too. So thank you for letting me share.
In the words of jake Bee Happy
Jakes biggest strength is his happiness, he can always smile no matter what.
Patients with DBA are at a higher risk rate of Leukemia and hemolytic malignanicies than that of the general population.
Most patients with DBA are diagnoised by their fisrt birthday. A nd in rare cases this can go undiagnoised untill it manifestes itself in early childhood.
DBA is where no or little red blood cells are produced by the bone marrow. The symptoms are hard to diagnosis due to the rare illness, Children will appear pale, fatigue, irritability, and even fainting. All common signs of everyday Anemia.
What have written is in no way to be used for medical reference.
Jake still has a irregular heartbeat due to the heart trying to keep thr oxygen moving throughout his body, but this is not as bad or as life threatening as it was when first admitted, And he has great doctors and nurses who are always checking him every week we are there.
Jake has been started on his first course of treatment, Which is predisolone at 20mg per day they started jake on this when his levels reached 8, as they suggested this would be the best time to try him, as he his Hb drops so quickly, and they didnt think he would reach 10. He has now been on the course for 5 weeks and as of yet it hasnt made any sign of working, and he has still had to have a transfusion, to push his levels up. But to say at his last appointment it had gone up by 0.2, which his specialist said wasnt enough to say it was working, to me Im holding onto hope that it is. But this wednesday coming the 17th we will know 1 way ot the other, if its working then we have a long wait to see if he can substain on it, and then battle all the side effects. Jake is having to have weekly gulcose tests to check for diabetes as this is a side effect to the drug. His levels go and down, but so far so good. And he is also piling the weight on, he is getting what you would say a moon face. x
Jake has to weighed and measured frequently as another side effect is weight gain and can stunt maturity growth. Another side effect jake has but I would'nt say serious is hungar, he is hungry all the time, we are lucky that jake likes healthier food he isnt as interested in sweet things, except skittles but only the purple ones. x
So I hope this helps a little to understand a little more about Diamond Blackfan Aniema and alittle more about Jake. I will add updates and more information as we get it. I also think this is helping me understand more too. So thank you for letting me share.
In the words of jake Bee Happy
Jakes biggest strength is his happiness, he can always smile no matter what.
Tuesday 9 August 2011
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
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
Subscribe to:
Posts (Atom)