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.
xxx
Sunday, July 25, 2010
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.
xx
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.
xx
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 :-)
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 :-)
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