Saturday, August 14, 2010

Venita/Ezekiel Update 14 August 2010

Hello everyone,

Once again we have taken longer than we would have liked, to bring you this update. Things have been very hectic. Two weeks ago Ezekiel got discharged from hospital and then the next day Venita was also able to come home to the Unit and start going in as a day patient. This involves Venita going into the hospital most days for different appointments, bloods, transfusions etc and then spending the rest of the time at the Unit as she is not allowed to go out in public places. It will be at least another 3 months before we will know whether this treatment is working at all. So it's a bit of a waiting game. The drugs have been causing Venita pain in her joints but aside from that, so far God willing, she has not caught any infections etc. A lot of the medications Venita is on are preventative measures against infections along with a low bacteria diet. Please continue to pray that she will not catch any infections.

In the meantime however, Ezekiel is a different story. He came home two weeks ago and was just starting to get better when on Monday night he became very ill again. Allan took him to the Women's & Children's Hospital where whilst waiting to be seen his temperature became 40.7. Consequently he got admitted believing he had a possible urine infection. He was started on IV antibiotics and put onto a drip for 2 days, his temperature remained in the 40's. On further testing they ruled out the urine infection and instead he tested positive for two viruses. By this stage due to the rapid IV Ezekiel became fluid bound now causing him to work harder with his kidneys, lungs and breathing requiring up to 8 litres of oxygen. The viruses have also caused vomiting, diarrhoea and mucous causing him to become weak. On top of all this, he has upper airway obstruction and has regularly stopped breathing while sleeping. Today they moved him to intensive care as he needs assistance with his breathing and without this, he can't fight off the infections in his body. They have put him on a much higher pressure oxygen through a humidifier which so far is stopping the obstruction however if he gets worse overnight they will put him on a ventilator. Please continue to pray for him. Allan has been with him all week and it has been a very stressful time. Venita has only been able to see him briefly twice due to the risk of infection to her. Today we learnt that another 3 of his Dr's are Christians. So that was very exciting to hear and gives us a bit more piece of mind.

Thank you everyone for all your support and prayers. We will udpate you again on Ezekiel's progress over the next day.

Allan & Venita

Sunday, July 25, 2010

Venita & Ezekiel are both in hospital now.

Hi there,

Just a quick note to let you all know what has been happening. Venita is now onto Day 5 of her first course of treatment. The 1st dose of 5 doses was administered on Wednesday however due to an allergic reaction overnight Wednesday night it was stopped so this now means instead of finishing today, there will be a catchup dose administered tomorrow.

After this, then she will be starting the next course of drugs, which from what we understand is the nastier of the two. So far Venita is feeling well and doesn't seem to be suffering any further side effects due to the rate being slowed down and anti-reaction drugs etc given before starting the doses in order to counteract any reactions.

In the meantime however, Ezekiel has become unwell and was admitted to the Women's & Children's Hospital this morning. He hasn't been able to keep his minimum fluids down, has been refusing food and is showing signs of respiratory problems once again. The Specialists have been concerned that this would happen and now it also means Venita will not be able to see Ezekiel until he is completely well due to the risk of infection. Poor Allan, who has been doing such a great job, is now stuck between two hospitals as well as trying to look after himself. Please pray that he will be able to get some much needed rest today and that he will continue to stay well.

Thanks everyone for all your love and support.


Thursday, July 22, 2010

Start of V's treatment.

Hello everyone,

Just a quick note to let you know that Venita has now officially started her in-patient treatment. There has been a major change with the treatment as the latest Bone Marrow Biopsy has shown some other changes that are not necessarily consistent with typical Myelodyplasia. Venita's blood counts/cells are dropping much faster than would be normal with this bone marrow failure so instead the Specialists have decided to try another treatment for a slightly different form of MSD first and have post-poned the Bone Marrow Transplant in the interim.

The treatment however is still similar as it suppresses the immune system and kills the bad cells etc and poses slightly less threats at this stage but had to be started a week earlier to give it the best possible chance. It will involve 2-3 weeks in hospital with two different cycles of treatment and as soon as Venita is stable enough she will be treated as an out-patient daily over the next 4 months. The results of this treatment won't be evident until about 3-4 months after which they will decide if the Transplant should go ahead.

As Venita's immune system is suppressed there are still very high risks of infections and subsequent hospitalisations. She will only be allowed to stay in hospital or the unit and therefore can only be in contact with people who are completely well. If there is anyone that would like to visit they need to speak to Allan first to check whether it is suitable. We trust that you understand this, we would love to see you, but this can only happen if you are well and Venita is well.

Back to the treatment to date; Venita got her PICC line in yesterday and yes as most of you said, the thought was far worse than the actual procedure however not something you would line up to do for the sake of it! Already Venita has appreciated the fact that she hasn't had to have pricks all day. The treatment so far hasn't been easy as Venita had bad reactions to it last night and was given all sort of anti-reaction drugs to counteract this. It also involved 15 minutely obs all night and 3 visits overnight from the Dr's as her blood pressure dropped very low. Today they have had to be very cautious and the rate of the infusion has been very low hoping for less chance of a bad reaction. Aside from this, there is not much else to say at the moment. We will let you know more as the time goes on.

Thanks for your continued prayers and support.


Monday, July 19, 2010

Photos of our lovely Unit.

Here we finally have some photos of the Unit that we are staying in. It has been provided by the Leukaemia Foundation for the duration of Venita's treatment. We have been very blessed by the support we have received from the Foundation.

Check out the playground! Ezekiel is going to have a ball here.
It's right outside our back door too.

Lastest Update on Ezekiel

Hey there,

Just a quick update re: Ezekiel's progress. Since he was hospitalised last month his feeding has improved slightly, although he still has required a lot of top-ups through his nasogastric tube.

His lastest appointment was on Wednesday 14th July where it was decided to put him on a continuous feeding pump overnight for 10 hours, allowing him to receive 300mls at a slow rate of 30mls an hour. This will then only require him to have 3 bottles during the day with 2 feeds spaced in between the bottles. By doing this, it also avoids the problems we face with getting large volumes in, in a short space of time. With Ezekiel's limited stomach space due to his kidneys he can find it hard to tolerate and often throws up, defeating the purpose of feeding him. His weight gain has also become borderline so with a combination of high calorie formula, nightly continuous feeds and an extra serve of solids this should improve.

So far the feeding is going really well and he has tolerated all feeds during the night and day. Another bonus with the continuous feeding is that we don't have to feed him 4 hourly during the night, as we have been the last few months. We are all feeling much better for this!

Please continue to pray that Ezekiel will continue to thrive on his feeds and maintain a healthy weight as well as healing for his kidneys. His next review will be on Wednesday 28th July so we will update you again on Ezekiel's progress after this.

Allan & Venita. xx

PS. His 2nd tooth finally cut through his gum on Friday! Yay! Also he is very close to walking.................he moves around heaps holding onto furniture so it won't be long. Luckily Dad gets to look after him now :-)

Tuesday, June 29, 2010

Adelaide here we come!

Hello everyone! We trust you are all well............. The last 6 weeks has felt like an eternity as we waited to hear more about the dates for Venita's treatment, and as most will know, Ezekiel also spent 8 days in the Women's & Children's Hospital undergoing a heap of tests. We had travelled to Adelaide for Ezekiel’s scheduled overnight ward oxymetry and were only meant to stay in Adelaide for 2 nights! Instead, Ezekiel underwent a whole range of tests over 8 days but no other clear answers have become evident at this stage, except that the size of his kidneys are not allowing much space for his stomach. His lack of stomach space has been a problem for some time however the sudden drop in fluid/solids intake has been a concern and there has been little weight gain. This is being monitored closely.

It was on the Thursday night, the day after Ezekiel got discharged and we had arrived home in Mt Gambier, that we received confirmation of Venita’s appointments etc. This meant we had to be back in Adelaide the following Monday 28th June for Venita to begin her tests and pre-assessments for the Bone Marrow Transplant. Once again God’s perfect timing was orchestrated on the Friday with the Leukaemia Foundation confirming that we had a Unit available to us from the Monday! The same day Allan resigned from work and worked his last shift. We then had two days to organise what we needed to take to Adelaide and left early on the Monday with a trailer load of Ezekiel’s stuff!

We have been blessed with a lovely 2 bedroom Unit supplied by the Leukaemia Foundation for the duration of Venita’s treatment, however long that may be. It is approx 8 km from the Royal Adelaide Hospital where Venita will be treated. We will upload some pictures of the Unit in the next day or so.

After arriving in Adelaide Venita underwent a series of tests; another Bone Marrow Biopsy & Blood Tests, Gated Blood Pool Scan to assess heart function, ECG, Dental Review, VRE Screen, CT Scan of Sinuses, Chest & Upper Abdomen, Lung Function tests, Education on Transplant Procedures and also Blood Transfusions. This was a long week and Allan was definitely straight into the role of full time Carer for Ezekiel! It is not an easy task keeping a 17 month old happy, all day for 4 days in a hospital!

At the end of a tiring and busy week we spent a lazy Saturday in the Unit before preparing to return back to Mount Gambier for one last week. We spent the week gathering our stuff to take back to Adelaide, catching up with friends and in between, Allan and Dad W ripped down the ceiling and walls in our back room. While we are in Adelaide Dad W is going to complete some much needed renovations to the house, particularly to make sure that it is hygienic for when Venita and Ezekiel both return.

We then officially left the Mount on Monday 12th July 2010 for Adelaide where we will be for up to 8-12 months whilst Venita undergoes her treatment. It has been an extremely busy time and it wasn’t until we went to update our blog that we realised how long it has been since our last update. We are sorry that we weren’t able to visit/contact everyone before we left but we will endeavour to update our blog more regularly as hopefully now that we are settled and have a little bit of order in our lives we will have more time. Thank you to absolutely everyone for your kind words, prayers, gifts and support. We just cannot express how much we appreciate and love each and every one of you and it has been totally overwhelming the love that has been shown to us. Particularly we must thank Ros Pasfield, a very dear and loved Friend of ours, who has initiated Fundraising to assist with the medical costs for Ezekiel and Venita. Thank you.

Finally to let you know, any mail can still be sent to: PO Box 2104, MOUNT GAMBIER SA 5290 as our mail has been redirected to our Unit. If anyone is in Adelaide and would like to visit, Allan can be contacted on his mobile for our address etc. Unfortunately anyone with any kind of infection/virus etc will not be able to visit due to Ezekiel’s and Venita’s health needs. Lastly if you would like to contact us for more information you can leave a comment on here or email:

Blessings to you all,

Allan, Venita & Ezekiel. xx

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.