Hi
We are at Great Ormond Street next week for two days to complete Olivers pre BMT tests/investigations. We will meet some of the transplant team and have a look around the unit. Its all getting very real now. We are now looking at w/c 27th April or the week after for being admitted. Im sure we will be given a solid date next week. Still very scared when I read the drugs hes going to be on, but keep trying to think positive.
Other news is that we are having another baby!?!/ Not planned and a big shock at first. Im actually 19 weeks pregnant but have not told everyone until now as we have been waiting for test results. We both decided that if it was a boy affected with WAS we would not continue with the pregnancy. Harsh and a hard decision but we simply could not put another child through what Oliver has been through and as Im definately a carrier, we had to be sure. The good news is that we are having a boy and he has NOT got WAS! Also, another bonus is that from the sample I gave when I had a CVS, they have found out that the baby is a complete match for Oliver. We are still going ahead with the donor we have as it is such a good match and they don't think its fair to make Oliver and us wait. However, when the baby is born we are collecting cord blood should (hopefully he wont) Oliver ever need a back up. Also we would be willing to donate to anyone who needs it should it turn out we don't.
I will keep you all posted. Paige, keep us updated on Ayden!
Tuesday, 31 March 2009
Sunday, 8 March 2009
8th March 2009
Well, its been a while since I last posted.
In November 2008 Oliver suffered a huge nosebleed which resulted in him having 2 platelet transfusions and a full blood transfusion. We nearly lost him. Thanks to the support of our local hospital and Great Ormond Street hospital, he pulled through and the bleeding stopped. Ive never been so afraid in my life. But our little soldier just keeps going and smiling most of the time.
Any doubts I have about transplanting Oliver fade away when I think about that dark week in November and we need to give him the chance of a normal life.
We have now got a donor for Oliver and are waiting for a confirmed admittance date for his transplant. We have been given lots of information from Great Ormond Street hospital, some of which is very frightening but I suppose we need to know all scenarios.
Oliver is now 3 1/2 and running us ragged. He continues to bruise extremely easily and we continue to have our heart in our mouths but hopefully this will be abeited soon.
We have been given a provisional date of 13th April - watch this space!
In November 2008 Oliver suffered a huge nosebleed which resulted in him having 2 platelet transfusions and a full blood transfusion. We nearly lost him. Thanks to the support of our local hospital and Great Ormond Street hospital, he pulled through and the bleeding stopped. Ive never been so afraid in my life. But our little soldier just keeps going and smiling most of the time.
Any doubts I have about transplanting Oliver fade away when I think about that dark week in November and we need to give him the chance of a normal life.
We have now got a donor for Oliver and are waiting for a confirmed admittance date for his transplant. We have been given lots of information from Great Ormond Street hospital, some of which is very frightening but I suppose we need to know all scenarios.
Oliver is now 3 1/2 and running us ragged. He continues to bruise extremely easily and we continue to have our heart in our mouths but hopefully this will be abeited soon.
We have been given a provisional date of 13th April - watch this space!
Friday, 31 October 2008
About us
Where do I start? Our son, Oliver was born in September 2005 apparently healthy until at 5 months old he developed small bruise type marks on his legs. After the 3rd occurence I took him to the GP and from then its been a roller coaster to say the least.
We were told Oliver had a low platelet count - your blood has red blood cells, white blood cells and platelets - Blood platelets are required for blood clotting, so low numbers of platelets can result in bloody diarrhea, prolonged bleeding from a cut or surgery, or unusual bruises on the body We should have a platelet count of between 140K and 300K - Oliver had 11K. The first thing we thought was our son had leukaemia and he went through a bone marrow biopsy at 5 months old. Waiting for those results was one of the longest days of our lives!! The results however came back negative.
Following this, Olivers platelet count was never normal and the excessive bruising and petechiae (small bruise like spots under the skin continued). He has also had many viral infections.
Following a process of elimination involving many tests, we asked for the WASp (Wiskott Aldrich Syndrome protein) test to be carried out.
This was carried out and at the end of July this year, it was confirmed that Oliver has Wiskott Aldrich Syndrome.
Wiskott-Aldrich syndrome is an immune deficiency disorder in which not enough immunoglobulin M (IgM) is produced by the body. Wiskott-Aldrich syndrome also causes low numbers of blood platelets (thrombocytopenia) which are also small in size, eczema, and an increased risk of developing an autoimmune disorder or cancer.
Wiskott-Aldrich syndrome is associated with a defective gene on the X (female) chromosome, so females tend to be carriers of the syndrome while males with the defective gene develop symptoms. Studies have shown that Wiskott-Aldrich syndrome occurs in 4 per million live male births, and affects people of all ethnic backgrounds.
The symptoms of Wiskott-Aldrich syndrome are related to the main effects of the syndrome on the body: Immune deficiency leaves the body vulnerable to infection. There may be serious infections such as pneumonia, meningitis, and blood poisoning (sepsis). Blood platelets are required for blood clotting, so low numbers of platelets can result in bloody diarrhea, prolonged bleeding from a cut or surgery, or unusual bruises on the body.
Eczema, a skin disorder, develops in more than three-quarters of individuals with Wiskott-Aldrich syndrome. Individuals with the syndrome may be more allergy-prone and may develop asthma. As many as 40% of individuals with Wiskott-Aldrich syndrome may develop an autoimmune disorder, with the most common being autoimmune hemolytic anemia, vasculitis, renal disease, arthritis, and Henoch-Schonlein purpura.
Treatment depends upon the symptoms the individual is experiencing. Low platelets and bleeding may require intravenous immunoglobulin, steroid medication such as prednisone, or blood transfusion. Eczema is treated with skin moisturizers and medicated creams. Infections are treated with the appropriate antibiotics. Individuals affected by Wiskott-Aldrich syndrome must receive close medical care including specialized allergy or immunology care. So far, the only possible cure for Wiskott-Aldrich syndrome is bone marrow transplantation. A compatible donor is required, and there are risks involved in the transplant. However, if it is successful, the blood and immune defects are corrected and the eczema resolves.
Naturally, we were devastated. We were referred to Great Ormond Street Hospital in London to a specialist to discuss options for our beautiful son.
Our first appointment was at the end of July to discuss treatment options for Oliver and agreed that we wanted to go ahead with a Bone Marrow Transplant to offer him the best chance possible of a normal and happy life.
We are now in October and we have been told that a donor has been found for Oliver on the Bone Marrow Donor registery. We are elated and frightened at the same time. What a wonderful and incredible gift we are being given.
We are now waiting for the appointment to discuss the transplant, and here begins a new chapter and journey for us and our wonderful son.
I would like to share this with you and in particular any parents who are going through the same thing.
I would also like to add that despite everything he has been through, Oliver remains a happy, giving little boy (most of the time - hes 3 - need I say more - parents will know what I mean!) who enjoys playing with his friends and is the absolute light of our lives.
We were told Oliver had a low platelet count - your blood has red blood cells, white blood cells and platelets - Blood platelets are required for blood clotting, so low numbers of platelets can result in bloody diarrhea, prolonged bleeding from a cut or surgery, or unusual bruises on the body We should have a platelet count of between 140K and 300K - Oliver had 11K. The first thing we thought was our son had leukaemia and he went through a bone marrow biopsy at 5 months old. Waiting for those results was one of the longest days of our lives!! The results however came back negative.
Following this, Olivers platelet count was never normal and the excessive bruising and petechiae (small bruise like spots under the skin continued). He has also had many viral infections.
Following a process of elimination involving many tests, we asked for the WASp (Wiskott Aldrich Syndrome protein) test to be carried out.
This was carried out and at the end of July this year, it was confirmed that Oliver has Wiskott Aldrich Syndrome.
Wiskott-Aldrich syndrome is an immune deficiency disorder in which not enough immunoglobulin M (IgM) is produced by the body. Wiskott-Aldrich syndrome also causes low numbers of blood platelets (thrombocytopenia) which are also small in size, eczema, and an increased risk of developing an autoimmune disorder or cancer.
Wiskott-Aldrich syndrome is associated with a defective gene on the X (female) chromosome, so females tend to be carriers of the syndrome while males with the defective gene develop symptoms. Studies have shown that Wiskott-Aldrich syndrome occurs in 4 per million live male births, and affects people of all ethnic backgrounds.
The symptoms of Wiskott-Aldrich syndrome are related to the main effects of the syndrome on the body: Immune deficiency leaves the body vulnerable to infection. There may be serious infections such as pneumonia, meningitis, and blood poisoning (sepsis). Blood platelets are required for blood clotting, so low numbers of platelets can result in bloody diarrhea, prolonged bleeding from a cut or surgery, or unusual bruises on the body.
Eczema, a skin disorder, develops in more than three-quarters of individuals with Wiskott-Aldrich syndrome. Individuals with the syndrome may be more allergy-prone and may develop asthma. As many as 40% of individuals with Wiskott-Aldrich syndrome may develop an autoimmune disorder, with the most common being autoimmune hemolytic anemia, vasculitis, renal disease, arthritis, and Henoch-Schonlein purpura.
Treatment depends upon the symptoms the individual is experiencing. Low platelets and bleeding may require intravenous immunoglobulin, steroid medication such as prednisone, or blood transfusion. Eczema is treated with skin moisturizers and medicated creams. Infections are treated with the appropriate antibiotics. Individuals affected by Wiskott-Aldrich syndrome must receive close medical care including specialized allergy or immunology care. So far, the only possible cure for Wiskott-Aldrich syndrome is bone marrow transplantation. A compatible donor is required, and there are risks involved in the transplant. However, if it is successful, the blood and immune defects are corrected and the eczema resolves.
Naturally, we were devastated. We were referred to Great Ormond Street Hospital in London to a specialist to discuss options for our beautiful son.
Our first appointment was at the end of July to discuss treatment options for Oliver and agreed that we wanted to go ahead with a Bone Marrow Transplant to offer him the best chance possible of a normal and happy life.
We are now in October and we have been told that a donor has been found for Oliver on the Bone Marrow Donor registery. We are elated and frightened at the same time. What a wonderful and incredible gift we are being given.
We are now waiting for the appointment to discuss the transplant, and here begins a new chapter and journey for us and our wonderful son.
I would like to share this with you and in particular any parents who are going through the same thing.
I would also like to add that despite everything he has been through, Oliver remains a happy, giving little boy (most of the time - hes 3 - need I say more - parents will know what I mean!) who enjoys playing with his friends and is the absolute light of our lives.
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