We are all glad that the weekend is now upon us. Shay has been through so much this week and at times totally heartbreaking to see our son in absoulte agony.
Shay had his transfusion today a day earlier than expected. He's had a very rough day and it has been the worst day by far. Our poor babe had so many needles inserted into his arms to try to put the cannular into a vein. Shay's arms are black and blue with the failed attempts at one point he was screaming saying "oh dear, oh dear, Mummy Mummy". To see your son going through so much pain and distress is completely soul destroying it breaks your heart.
Shay also had a failed blood test yesterday as his veins have given up. Today was exactly the same in the end they managed to put the cannular into his foot which meant he sat for over four hours while being transfused. The doctor was fantastic and kept apologising to me and she talked to Shay throughout the procedure. To make matters worst half way through the transfusion Shay was showing a reaction to the blood with tiny pin pricks spots up his arms, trunk and face. He didn't have a temp and his blood pressure was fine it was just the rash. Shay has now recovered from this and is now sleeping like an angel in bed.
There really isn't another child like Shay, everything that is thrown at him he just keeps on coming back stronger and stronger. It makes you realise what a very special boy we have and how lucky we are to have two wonderful children who are alway's a joy to be around.
Blood results;
Hb - 6.7
Neurophills - 0.36
WBC -2.64
Platelets - 126
About Me
- Shay
- London, United Kingdom
- Welcome to Shay's story and thank you for taking the time to find out how Shay is doing. It is a place to share our hopes, sadness and the happy times that our little man has. Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. It characteristically present in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea. Additional manifestations often include progressive external ophthalmoplegia, proximal myopathy with weakness, and neurologic disturbances. Multiple organ involvement is quite variable. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. These children eventually undergo a transformation from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation and episodic coma. Life as we use to know it I cannot remember. We have to live in hope that a miracle will happen for our son.
Thursday 30 April 2009
Tuesday 28 April 2009
Biopsy
Shay was on great form today and we got him dressed and out of the house before he could even think of his breakfast this morning.
His biopsy went very smooth for Shay and even with the gas mask on him he slowly went to sleep. Unlike last time where his eyes were rolling and he was struggling.
The only problem they had (Shay has to have at least one) was with the removal of the core of bone marrow, another doctor was called in to assist with this and the problem was quickly fixed. All the time Shay was inside with the doctors, Alan and I were trying to look up the corridor through the glass doors timing when he would be out. I'm sure next time there will be curtains put in place to stop us questioning every nurse that leaves through those doors :0).
Blood results to follow tommorow
His biopsy went very smooth for Shay and even with the gas mask on him he slowly went to sleep. Unlike last time where his eyes were rolling and he was struggling.
The only problem they had (Shay has to have at least one) was with the removal of the core of bone marrow, another doctor was called in to assist with this and the problem was quickly fixed. All the time Shay was inside with the doctors, Alan and I were trying to look up the corridor through the glass doors timing when he would be out. I'm sure next time there will be curtains put in place to stop us questioning every nurse that leaves through those doors :0).
Blood results to follow tommorow
Friday 24 April 2009
Another blood test
After numerous phonecalls this morning it was decided that Shay needed another full blood count done for his forthcoming biopsy. This is to make sure that his levels are high enough for him to have a general, otherwise his blood transfusion will be Monday coming instead of the Friday.
As soon as Shay saw the tegaderm plasters and cream Bless him he asked to have his cream on. He really is a courageous little boy with everything that he has to put up with. Next Week is going to be a full on week for Shay with many hours spent in hospital.
Shay's Hb has dropped again since Tuesday but his platlets are back up which is great. He will not need the transfusion on Monday now but is still booked in for next Friday.
Hb - 7.3
Neurophills - 0.4
WBC - 3.3
Platelets - 120
As soon as Shay saw the tegaderm plasters and cream Bless him he asked to have his cream on. He really is a courageous little boy with everything that he has to put up with. Next Week is going to be a full on week for Shay with many hours spent in hospital.
Shay's Hb has dropped again since Tuesday but his platlets are back up which is great. He will not need the transfusion on Monday now but is still booked in for next Friday.
Hb - 7.3
Neurophills - 0.4
WBC - 3.3
Platelets - 120
Thursday 23 April 2009
Forthcoming Bone Marrow Biopsy No.2
We received a phone call from Shay's nurse at Great Ormond Street tonight. They have booked Shay in for his 2nd marrow biopsy next Tuesday. As you know he hasn't lasted as long with the last transfusion and the only way to see how his marrow is progressing is with another biopsy.
A Bone Marrow Biopsy is to examine Shay's bone marrow and identify any abnormality in his developing blood cells. This will tell us the percentage of abnormal cells in his marrow plus many other things that are happening. Previously Shay had 31% ringed sideroblasts - which isn't good and 4% blasts in his marrow- which is good as leukemia is diagnosed at 20% blasts. Shay's blood cells in the marrow will be examined for their shape, size, number and characteristics.
Shay was in a dangerous situation when he had his 1st biopsy under general anaesthetic, his oxygen levels dropped to 40%. What happened to Shay was extremely rare and normally patients need drugs to bring them back around. Shay being being typical Shay managed to come out of it with no help from drugs whatsoever always showing amazing strengh for the amount of things that he has to go through.
A Bone Marrow Biopsy is to examine Shay's bone marrow and identify any abnormality in his developing blood cells. This will tell us the percentage of abnormal cells in his marrow plus many other things that are happening. Previously Shay had 31% ringed sideroblasts - which isn't good and 4% blasts in his marrow- which is good as leukemia is diagnosed at 20% blasts. Shay's blood cells in the marrow will be examined for their shape, size, number and characteristics.
Shay was in a dangerous situation when he had his 1st biopsy under general anaesthetic, his oxygen levels dropped to 40%. What happened to Shay was extremely rare and normally patients need drugs to bring them back around. Shay being being typical Shay managed to come out of it with no help from drugs whatsoever always showing amazing strengh for the amount of things that he has to go through.
Wednesday 22 April 2009
Latest results - 21/4/09
Hb - 7.6
Neurophills - 0.52
WBC - 3.31
Platelets - 76
Shay will be having another blood test on Friday 1st May and it is now looking like another transfusion is just around the corner for him.
His last transfusion has not lasted as long as we hoped so until a diagnosis is made he is just being given supportive care.
His platelets are the lowest they have ever been and Shay does take a longtime to heal from knocks and bumps and he will have bruises for quite a few weeks. We haven't noticed any changes with him bruising more than usual which is a blessing as he really doesn't need anymore problems at this stage.
Shay is constantly amazing us! At the age of two his co-ordination is fantastic he can now jump with two feet and is showing an interest in doing up buttons :0. His speech is coming on remarkably and can phonically sound out the letters you say to him with perfection (If you ask him to do this on command he promptly sucks his thumb and refuses to co-operate with us :0).
Neurophills - 0.52
WBC - 3.31
Platelets - 76
Shay will be having another blood test on Friday 1st May and it is now looking like another transfusion is just around the corner for him.
His last transfusion has not lasted as long as we hoped so until a diagnosis is made he is just being given supportive care.
His platelets are the lowest they have ever been and Shay does take a longtime to heal from knocks and bumps and he will have bruises for quite a few weeks. We haven't noticed any changes with him bruising more than usual which is a blessing as he really doesn't need anymore problems at this stage.
Shay is constantly amazing us! At the age of two his co-ordination is fantastic he can now jump with two feet and is showing an interest in doing up buttons :0. His speech is coming on remarkably and can phonically sound out the letters you say to him with perfection (If you ask him to do this on command he promptly sucks his thumb and refuses to co-operate with us :0).
Tuesday 21 April 2009
Our Green eyed boy
Shay had his monthly appointment at GOSH today and we have come away very unsure and confused of everything that is happening at the moment.
There is no match for Shay on the uk registry but they have found a few mis-matches which is far from ideal but they are going to look more closely at them. Their next step is to do a worldwide search for Shay hoping they will find that perfect 10. The bone marrow transplant is the cure for MDS and hoping that this is what Shay will be diagnosed with rather than the Pearson's.
We were talking to the doctor today and a few things have come to light which we did not know about. I can understand them not telling us everything as until results come in why worry. The doctors think that more than likely Shay has 'Pearson Syndrome' even though he doesn't show all of the symptons. We were told that when they looked at his marrow biopsy months ago and they thought then that he had the 'Pearson's'.
We won't know for sure until that test result is back in which could be weeks or even months, the doctors don't even know. We have to hope and pray that it comes back negative because at the moment we're in a place where no parent wants to be or even deserves to be; this is a syndrome that has no cure, no future and is fatal.
Our family unit has to remain strong for Shay, Chrissy all of us. We are full of hope and belief that our little man is going to have a future that he can look forward to. We refuse to give in and have that taken away from him, his sister and us without putting up a fight for our little man.
There is no match for Shay on the uk registry but they have found a few mis-matches which is far from ideal but they are going to look more closely at them. Their next step is to do a worldwide search for Shay hoping they will find that perfect 10. The bone marrow transplant is the cure for MDS and hoping that this is what Shay will be diagnosed with rather than the Pearson's.
We were talking to the doctor today and a few things have come to light which we did not know about. I can understand them not telling us everything as until results come in why worry. The doctors think that more than likely Shay has 'Pearson Syndrome' even though he doesn't show all of the symptons. We were told that when they looked at his marrow biopsy months ago and they thought then that he had the 'Pearson's'.
We won't know for sure until that test result is back in which could be weeks or even months, the doctors don't even know. We have to hope and pray that it comes back negative because at the moment we're in a place where no parent wants to be or even deserves to be; this is a syndrome that has no cure, no future and is fatal.
Our family unit has to remain strong for Shay, Chrissy all of us. We are full of hope and belief that our little man is going to have a future that he can look forward to. We refuse to give in and have that taken away from him, his sister and us without putting up a fight for our little man.
Wednesday 8 April 2009
Update -Blood Test Results
Shay had his two weekly blood test yesterday. As always he shows remarkable courage and strengh for a two year old and is now so use to having blood taken from him that he even tries this on his beloved Ted. Most two year olds would run screaming from the room with the amount of needles that our darling boy has seen.
His results were a bit of a shock yesterday as he only had his transfusion two weeks ago and we thought they would be on the up rather than down again. To say the least Shay has changed personality since the last transfusion he has become scatty and a joker (even his childminders Sally & Mick have noticed a huge difference in him). The dreaded Tesco shop with Shay can be a major event! Even though Daddy for some unknown reason never has problems when the boys our out shopping together (more likely that Daddy lets him pick everything up)
Shay's latest results;
Hb - 9.3
Neurophills - 0.39
WBC - 2.88
Platelets - 126
His results were a bit of a shock yesterday as he only had his transfusion two weeks ago and we thought they would be on the up rather than down again. To say the least Shay has changed personality since the last transfusion he has become scatty and a joker (even his childminders Sally & Mick have noticed a huge difference in him). The dreaded Tesco shop with Shay can be a major event! Even though Daddy for some unknown reason never has problems when the boys our out shopping together (more likely that Daddy lets him pick everything up)
Shay's latest results;
Hb - 9.3
Neurophills - 0.39
WBC - 2.88
Platelets - 126
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