Hi All,
We have decided to create this blog to update everyone on our journey. Since July 2008 we have been on a journey with our beautiful miracle "Ezekiel". Right from the moment we found out I was pregnant through to the 15 month old boy we have today, there have been many ups and downs. We thank God for the strength he gave us and that we chose to keep our precious baby and not terminate as the Dr's suggested. We cannot imagine life without him, without his precious smile, infectious laugh, the wonderful sound of him crying in the night (lol) and those beautiful blue eyes. We do however long for the day when we don't have to see him suffer when he gets so sick, for him to be off his medications and oxygen, to not have the worry of whether his kidneys are functioning properly and for him just to have a normal life. Please continue to pray that he will be healed.
Along with Ezekiel's journey, Venita now has a new journey of her own. This journey is one that we would like to be able to terminate and say goodbye to....however for this to happen another miracle has to take place. Since the birth of Ezekiel, Venita has been seen by a Haemotologist due to unusual platelet and haemoglobin levels. After a lot of testing and bone marrow biopsies, Venita has been diagnosed with Myelodysplasia (MDS). Basically, this is a disorder of the stem cells in the bone marrow resulting in an inadequacy to synthesize blood cells, including oxygen-carrying red blood cells, for the body’s needs. MDS has also been nick-named pre-leukaemia therefore carrying with it a high risk of progression to acute myelogenous leukaemia (AML).
Thankfully this disease was picked up through having Ezekiel and quite possibly may not have been picked up until it was too advanced. At this point in time and at the current stage of this disease, Venita has been given 2 years to live, with the main treatment for this condition being supportive care in the form of blood transfusions to relieve symptoms. Already Venita is receiving these monthly which is much sooner than expected. The only other option at this point in time is for Venita to undergo a Bone Marrow Transplant. Being younger (most people are aged 50+) and reasonably well still, this is the best chance for longer term survival with a 30% chance of cure and if not, at least more than two years. At the moment we are waiting to see if there may be a match within the family (25% chance), and if not, a search will begin in the National Bone Marrow Registry. This can take some time, but when a match is found they would like to do the transplant as soon as possible. This is a very extensive and high risk procedure and will involve approximately an 8 month stay in Adelaide for treatment.
We are trusting in God and holding onto his promises as only he knows the number of our days. We know that God is in control, although it is out of our control and all we can do is lean on him day by day. Thank you to everyone for all your prayers, kind words and support. Please continue to pray for healing for both Ezekiel and Venita, and that a suitable and willing match may be found for Venita quickly.
We will do our best to keep everyone up to date on both Ezekiel and Venita's progress by using this blog. It is impossible to email everyone individually and it does become costly returning calls etc. We trust that you understand this, but it doesn't mean to say that we don't want to hear from you in other forms however this blog will be our main form of communication.
Love you all heaps and God bless,
Allan, Venita & Ezekiel.
We have decided to create this blog to update everyone on our journey. Since July 2008 we have been on a journey with our beautiful miracle "Ezekiel". Right from the moment we found out I was pregnant through to the 15 month old boy we have today, there have been many ups and downs. We thank God for the strength he gave us and that we chose to keep our precious baby and not terminate as the Dr's suggested. We cannot imagine life without him, without his precious smile, infectious laugh, the wonderful sound of him crying in the night (lol) and those beautiful blue eyes. We do however long for the day when we don't have to see him suffer when he gets so sick, for him to be off his medications and oxygen, to not have the worry of whether his kidneys are functioning properly and for him just to have a normal life. Please continue to pray that he will be healed.
Along with Ezekiel's journey, Venita now has a new journey of her own. This journey is one that we would like to be able to terminate and say goodbye to....however for this to happen another miracle has to take place. Since the birth of Ezekiel, Venita has been seen by a Haemotologist due to unusual platelet and haemoglobin levels. After a lot of testing and bone marrow biopsies, Venita has been diagnosed with Myelodysplasia (MDS). Basically, this is a disorder of the stem cells in the bone marrow resulting in an inadequacy to synthesize blood cells, including oxygen-carrying red blood cells, for the body’s needs. MDS has also been nick-named pre-leukaemia therefore carrying with it a high risk of progression to acute myelogenous leukaemia (AML).
Thankfully this disease was picked up through having Ezekiel and quite possibly may not have been picked up until it was too advanced. At this point in time and at the current stage of this disease, Venita has been given 2 years to live, with the main treatment for this condition being supportive care in the form of blood transfusions to relieve symptoms. Already Venita is receiving these monthly which is much sooner than expected. The only other option at this point in time is for Venita to undergo a Bone Marrow Transplant. Being younger (most people are aged 50+) and reasonably well still, this is the best chance for longer term survival with a 30% chance of cure and if not, at least more than two years. At the moment we are waiting to see if there may be a match within the family (25% chance), and if not, a search will begin in the National Bone Marrow Registry. This can take some time, but when a match is found they would like to do the transplant as soon as possible. This is a very extensive and high risk procedure and will involve approximately an 8 month stay in Adelaide for treatment.
We are trusting in God and holding onto his promises as only he knows the number of our days. We know that God is in control, although it is out of our control and all we can do is lean on him day by day. Thank you to everyone for all your prayers, kind words and support. Please continue to pray for healing for both Ezekiel and Venita, and that a suitable and willing match may be found for Venita quickly.
We will do our best to keep everyone up to date on both Ezekiel and Venita's progress by using this blog. It is impossible to email everyone individually and it does become costly returning calls etc. We trust that you understand this, but it doesn't mean to say that we don't want to hear from you in other forms however this blog will be our main form of communication.
Love you all heaps and God bless,
Allan, Venita & Ezekiel.
