Thursday, May 27, 2010

Our First Answer to Prayer!

Hello everyone,

We pray that you are all well and enjoying life. Just a very brief update to let everyone know that Venita has a bone marrow MATCH! Praise God. We can also now confirm that the match is Venita's only sibling and brother, Damien. There was a 25% chance that he would be a match and amazingly he was! This is our first answer to prayer and now means there shouldn't be too many more delays before the transplant process can begin. Thank you Damien for your willingness to donate.

We are now waiting on dates as to when all the tests and treatment will start. We gather from our conversations with the Professor and Transplant Coordinator that tests will begin in about 4 weeks.

So this means now we can begin to action some things to prepare for our stay in Adelaide. The time will go quickly as we sort out our house, pack and do everything needed to relocate. The Leukaemia Foundation will provide housing for us for the 8 month minimum stay in Adelaide, which is a real blessing.

We also have a close friend, who along with our church/family are looking to organise some fundraising to assist with some of the associated costs as Allan will have to leave work to become Ezekiel's fulltime Carer due to his high needs. Thank you so much to everyone involved in this. We cannot express how much this means to us.

When we have some more information on dates etc we will update you again. Until then thank you so much for all your prayers and support. Please continue to pray for everything to keep falling into place and for God's will to be done.

Last but not least please continue to pray for Ezekiel for the upcoming months as winter draws near. He has already had respiratory problems due to a virus and was hospitalised last week for this. His Specialists are rather concerned as to how he will handle the winter months this year as his lungs are still small etc. He is also not feeding well and has another nasogastric tube to assist with this. If this continues, they may consider a PEG tube straight into his stomach to assist with feeding. We are praying that it will not come to this.

God bless,
Allan, Venita & Ezekiel

Friday, May 14, 2010

Our Journey

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.