Well, after seeing my haematologist again and having yet another discussion about the mediport, we have decided to not have one now. Because I do have lower neuts and are not using medication to increase my neuts because of the risk of leukaemia.....we are preferring to not have a port as long as we can get away with it. I am also not planning on transplanting. That was a decision made a while ago and so having the meds to increase the neuts just for the sake of a port is not worth the risk of leukaemia. We want to keep my marrow as stable as possible because I am not choosing transplant. I suppose I could always change my mind but I have a peace. I was worried about the port because of risk of infection and right now I am SO well and live reasonably normally from day to day because I don't get many infections. My neuts are between 500 and 1000 on a regular basis......except for that freak drop a month ago to 200. The other thing is that the port is for the IVIG alone and nothing else right now and my haematologist thinks that my levels of IgG may now handle me stretching from every 4 weeks to every 6 weeks now. That will also give my veins a break. So we will be trialing 6 weekly. I will have a couple more times of IVIG at 4 weeks and have my levels tested and then have it 5 weekly and levels tested and then 6 weekly and levels tested and we will see if I can tolerate it. It would be great to have them at 6 weekley as opposed to 4 weekly!
I am aware that if this treatment does get more intense or my veins completely shut down that the port may be necessary no matter the neuts but we will deal with that when and if that happens. If I ever had a transplant, some kind of line is put in anyway.
Yesterday I went to see my gynae/OB about the results to a few tests. All is well but due to some other reasons we might have to use ultrasound for cancer surveillance as opposed to a hysteroscopy for a while. No bad reason for this......but a good reason for it. Also we rang the Women's and Children's Hospital and they are happy for me to come back there for blood tests as they can use paediatric needles to access my tiny veins. Adult nurses are forever poking away but these people leave little trauma. I went there yesterday and they make blood taking SO easy! They use a butterfly needle which is real small and it is very easy. No pain and no trauma. So had bloods yesterday and will get results on Monday.
Well Isaac has been in year 1 at school for 3 weeks. Isaac loves school and the teacher tells us he is like a "machine". He sits there with great concentration and works so well. He is very particular with his work. Isaac even got a prize last week for being the best boy worker! We are proud of him. However, on a Thursday and a Friday he is really tired and grumpy. Yesterday when I went to pick him up he looked unwell! He was pale with really red eyes. I even asked him if he was ok! The teacher sat down with me for about 20 mins and explained that Isaac doesn't seem to be coping on a Thursday and definitely not a Friday. That is is such a good worker but his eyes glaze over on a Thursday afternoon and on a Friday is becomes very vague. They have a spelling test on a Friday and he wrote words like he couldn't even write! That is not him. On Thursday night when I tested him at home he got them all right. She thinks he is just too tired and so to help him out suggested that, if it is not a problem with us, that Isaac only has a half day of school on the Wednesday so he can rest. She told me that they do no new work on Wed afternoons. Isaac is a big sleeper. Before he started reception last year he was sleeping for about 1.5 to 2 hours in the afternoon still. He actually needs a lot of sleep to function. So year 1 is obviously very busy for him and he is concentrating so hard that he is getting exhausted. So for the rest of term 1, Isaac will have Wed afternoons at home from about 12pm. She suggested him not being woken for school on Fridays. However, we thought we would try the Wed thing first and then if he still isn't coping, let him sleep in on a Friday and have him at school by 0930am instead of 0825am. She said that with this extra rest he can then concentrate on the things that are important and I agree. Isaac is one of the littlest in the class and the teacher thinks he is just that little bit younger too. Oh well....he is a hard worker and quite bright. She thinks he is an incredible worker.... We are also trying to get lights out at night by 7pm instead of 7.30pm. It is actually really hard. Because of daylight savings it is still bright outside at 7.30pm, let alone 7pm! We pull all the blinds down but still........night time routine is quite busy! This drama with tiredness only reminds you how much 6 year olds are still babies in different areas. It is so important for them to have plenty of rest still.
Well, Saturday today. We have a kid's birthday party on this afternoon so that should be fun.
Tomorrow is church and I am worship leading tomorrow. I always get a little nervous but trust God that it will go well.
Last Sunday I shared something with the church and at the end of the service we had an alter call and I was called to pray for these people. God is stretching my boundaries. I saw Him work awesomely!
Oh! I dreamt about Teresa and Tyler Clifton and TS, Emma and Violet! Haha......it was such a vivid dream! Ha! Alan and I went to visit them and knocked on their door. There was lots of crazy moments and laughing. It was a fun visit.....hehe....if only it was for real....hehe
Right, thanks for popping in. Got to go. I am lazy today and haven't had a shower yet. Can you smell me? Hehe.
Lots of love,
Charisse
Friday, February 20, 2009
Tuesday, February 10, 2009
Fear
Fear.......it takes hold so quickly, don't you think?
It is late. I should definitely be in bed. It is 1211am here. I am ready for bed but I couldn't go to bed without writing this post. I didn't plan on writing tonight at all. However, fear......that is why I need to write. Get it out!
Jesus can WOW you with amazing miracles that you see happen through you, affecting someone else. He seems to amaze me that way. Not only that He can and does do miracles within my own body with FA and with life. That amazes me and I shouldn't be amazed because He is God. How Jesus affects my life gives me an amazing buz and an amazing joy and I want to see more miraculous stuff happen through me and to me. I can't wait to see some amazing promises that God has promised me personally, to come true. He is a God of promises that will be fulfilled. He is not a God of empty promises. I have felt God and heard God.....Jesus and it is amazing. So why do I feel fear????
We were reading a Bible story for devotions with Isaac the other night. It really hit home as to how the human race operates. Basically, it was the story of Elijah the Prophet of God in the Old Testament. The King and Queen at this time in History were Ahab and Jezebel. Queen Jezebel was well known for worshipping other gods and not the true God.....Isaac, Alan and I call Him the "Jesus God"....hehe...so Isaac knows who we are talking about :-) She led her husband into this sin too. They worshipped a false God named "Baal". The Prophet of God and the Prophets of the false god, Baal....had it out so to speak. Do you remember the story? They both got a bull and killed it and offered it as a sacrifice to their god. Elijah put his on the alter with sticks and covered the sticks with water and around the alter too in order to show that it was impossible to light it with fire. The prophets of Baal did the same but didn't pour water over the sticks. They were both to call to their god and see who would send fire down from Heaven to burn the bull. Well while the false god didn't do a thing after all their prayers...so to speak, .....God, the Jesus God...the One and only......sent fire down from Heaven and despite the water all over the alter and sticks and stuff...the bull was all burnt up! What a POWERFUL demonstration of our Lord Jesus Christ! What a powerful demonstration of God's power! And......Elijah got to witness this amazing, mind boggling miracle! You would think that he would never ever doubt God again and that it had made his day!
Yet, still, Queen Jezebel threatened him with death and Elijah ran because He was scared!!!! Wow, what a turn of events. You witness something that is truly amazing and then in the next heart beat you run and are frightened......all because of fear. In the Children's Bible God asks Elijah why he has run and he says he is scared and God says that he must go back as his work is not yet done! TRUST!!!
As humans it is so easy to witness a supernatural event that affects you deeply and then in the same heart beat it is easy to get caught up with what is life.......and feel fear despite what you have witnessed. We need to remind ourselves over and over again what God can do and what He just did that was amazing!!
I find myself getting fearful of the medical so easily. I know God doesn't think badly of me because of that at all......however, I am trying to remember the amazing things He has shown me the last 2 to 3 months and the supernatural stuff I was talking about. God can affect so much more than we give Him credit for.
Something scary was mentioned on the FA group today. I don't think it was bad for these people to share and we welcome their experience and advise. Gladly......however, my mind has a habit of panicking. I know that I have pre-leukaemia and clonal changes and have so for years. So I suddenly panic when I read something and go looking for more problems because what if I am sicker than I am....when I need to be on alert.....yes, but I also need to rest in the promises that God has given me and TRUST Him as well because only when I do that do I feel peace. Having FA is scary. The complications that come with FA can be terrifying. AS a group, the FA Family manages together. I pray that God will continue to keep my body still ticking and working ok despite all the issues I have. I have to trust Him no matter how scared I feel.
Elijah saw something amazing and then forgot. We all do it. God has grace.
I just needed to get that out.
Thanks for your support.
Love Charisse
It is late. I should definitely be in bed. It is 1211am here. I am ready for bed but I couldn't go to bed without writing this post. I didn't plan on writing tonight at all. However, fear......that is why I need to write. Get it out!
Jesus can WOW you with amazing miracles that you see happen through you, affecting someone else. He seems to amaze me that way. Not only that He can and does do miracles within my own body with FA and with life. That amazes me and I shouldn't be amazed because He is God. How Jesus affects my life gives me an amazing buz and an amazing joy and I want to see more miraculous stuff happen through me and to me. I can't wait to see some amazing promises that God has promised me personally, to come true. He is a God of promises that will be fulfilled. He is not a God of empty promises. I have felt God and heard God.....Jesus and it is amazing. So why do I feel fear????
We were reading a Bible story for devotions with Isaac the other night. It really hit home as to how the human race operates. Basically, it was the story of Elijah the Prophet of God in the Old Testament. The King and Queen at this time in History were Ahab and Jezebel. Queen Jezebel was well known for worshipping other gods and not the true God.....Isaac, Alan and I call Him the "Jesus God"....hehe...so Isaac knows who we are talking about :-) She led her husband into this sin too. They worshipped a false God named "Baal". The Prophet of God and the Prophets of the false god, Baal....had it out so to speak. Do you remember the story? They both got a bull and killed it and offered it as a sacrifice to their god. Elijah put his on the alter with sticks and covered the sticks with water and around the alter too in order to show that it was impossible to light it with fire. The prophets of Baal did the same but didn't pour water over the sticks. They were both to call to their god and see who would send fire down from Heaven to burn the bull. Well while the false god didn't do a thing after all their prayers...so to speak, .....God, the Jesus God...the One and only......sent fire down from Heaven and despite the water all over the alter and sticks and stuff...the bull was all burnt up! What a POWERFUL demonstration of our Lord Jesus Christ! What a powerful demonstration of God's power! And......Elijah got to witness this amazing, mind boggling miracle! You would think that he would never ever doubt God again and that it had made his day!
Yet, still, Queen Jezebel threatened him with death and Elijah ran because He was scared!!!! Wow, what a turn of events. You witness something that is truly amazing and then in the next heart beat you run and are frightened......all because of fear. In the Children's Bible God asks Elijah why he has run and he says he is scared and God says that he must go back as his work is not yet done! TRUST!!!
As humans it is so easy to witness a supernatural event that affects you deeply and then in the same heart beat it is easy to get caught up with what is life.......and feel fear despite what you have witnessed. We need to remind ourselves over and over again what God can do and what He just did that was amazing!!
I find myself getting fearful of the medical so easily. I know God doesn't think badly of me because of that at all......however, I am trying to remember the amazing things He has shown me the last 2 to 3 months and the supernatural stuff I was talking about. God can affect so much more than we give Him credit for.
Something scary was mentioned on the FA group today. I don't think it was bad for these people to share and we welcome their experience and advise. Gladly......however, my mind has a habit of panicking. I know that I have pre-leukaemia and clonal changes and have so for years. So I suddenly panic when I read something and go looking for more problems because what if I am sicker than I am....when I need to be on alert.....yes, but I also need to rest in the promises that God has given me and TRUST Him as well because only when I do that do I feel peace. Having FA is scary. The complications that come with FA can be terrifying. AS a group, the FA Family manages together. I pray that God will continue to keep my body still ticking and working ok despite all the issues I have. I have to trust Him no matter how scared I feel.
Elijah saw something amazing and then forgot. We all do it. God has grace.
I just needed to get that out.
Thanks for your support.
Love Charisse
Friday, February 6, 2009
IVIG Infusion
Hi Guys,
well I had IVIG infusion yesterday. I felt quite nervous as I didn't have my port in due to the low neuts and I was afraid that the nurses would be cross with me as they have been in the past. I know, I know.....that shouldn't happen. I know they think that I am just stubborn at times and won't accept a port but this time I said "yes" and it was cancelled just before I was being taken in for the operation. I couldn't try harder than that. After that experience, I have had more chats and I don't think I should have this port and I believe God doesn't want it for me right now. The risk of infection for me it just too great right now and I believe God has been protecting me from that. I am SO well and hardly ever have serious infections. I agree with my haem about the risk of infections with a port for me when I have lower neuts and white blood cells. They have always been low......but my body is well adapted to it and I am well, pretty much, all the time.
A port really worries me and even when I was about to go into surgery, I didn't feel 100% comfortable. Lots of FA patients with ports have injections to get their neuts to normal levels or close to so infection isn't as bad a problem and with my pre-leukaemia, this is not advisable. If I am having no problems with a neut count between 500 and 1500, then why treat with something that is dangerous. However, the port can be a problem when I sit at 500 or 400 and have freak drops to 200.
I am so glad that Alicia is doing better now. I know she is vulerable after a transplant and has a different line in but it frightened me to hear that her very high temperature and difficulties and stay in ICU was caused by an infection to her line. I think her white blood cell and neuts are higher than mine and she got this infection! I can't imagine how my body would deal with things when I have lower neuts and white blood cells. I do know that recovering from a transplant makes you vulnerable though. Michelle, we are praying for Alicia.
Anyway, the nurses seemed to handle the "no port" well yesterday and didn't yell or be pushy when they heard how a port can be more complicated for me. I do know that they wish I had a port though. I believe if God doesn't want me to have it for now, He will provide a solution. Miracles can happen and some supernatural stuff has been happening between God and my life which is way exciting. Why couldn't He heal my veins or cause me to not need IVIG for the rest of my life. Mircales do happen. You may not believe me if I told you the supernatural things happening in my life right now. What a joy to be a born-again Christian! When you ask for God to move in your life and tell Him you are serious, there is no end to what He can do and I know this is still only the beginning!
So to break out of my fear of using one vein I got them to experiment yesterday. I know my left arm is not good but there is a vein. It never gets used. Unfortunately, the nurse who was having a go yesterday was very tentative and I think the vein didn't pop up for her how it could have. Being a nurse myself, there are some things I would have changed about her technique for a difficult vein but I didn't want to tell her more than I was suggesting otherwise it is like I am taking over....hehe
So we ended up going for my right arm after she missed. It didn't even go in a vein. The usual nurse came then, who is a little more agressive but this is perfect for my veins. I showed her a place that I wanted which was close to the usual spot but a little further away to give the usual spot a rest and she did it! Yay! A tiny bit of bruising but at least that is all done for another month. I wait to see what God has in store. I don't feel too bad today. It is about 104 degrees F the last two days. For us Australians, that is 41 to 42 degrees Celsius. Today is a BIG fire warning day because of the intense wind and the hot weather. Tomorrow we are supposed to have a HUGE cool change! Yay!
So I told my head and neck oncologist about the problems with the surgeon and my head cancer site. He was "ozzed" as Alan and I would say. That means " thinks the surgeon is silly" but he said it in a real professional way. He doesn't want to waste time with a guy who is not going to take us seriously. So we are giving him one more go. I will make appointments with this surgeon every 3 weeks for my head. If my head is not acting up, I can cancel and if it is....I go and show him and he can't complain that I am trying to make him available to me 24 hours a day because I am making regular appoints so he can see. If this fails to work.....we are finding someone else. We don't have time to waste with someone who won't help and see the seriousness of keeping this under control.
We have been praying for my scar to be restored here at prayer meeting and if it doesn't act up again! That would be a miracle which wouldn't surprise me with the supernatural stuff going on.....good God stuff...... encourage you. If you want things to change in your life, call on Jesus....because He will do amazing supernatural things in your life. So many people are happy with life just going on as it is, the ocassional blessing.....but you can have so much more and I am just starting to learn that! My health is also being affected amazingly by God!!
Anyway, sorry....I am just excited! I still get down but have to remind myself about what God is doing.
ok, so that is all for today. Thanks for visiting and I will update you soon again!
Love Charisse
well I had IVIG infusion yesterday. I felt quite nervous as I didn't have my port in due to the low neuts and I was afraid that the nurses would be cross with me as they have been in the past. I know, I know.....that shouldn't happen. I know they think that I am just stubborn at times and won't accept a port but this time I said "yes" and it was cancelled just before I was being taken in for the operation. I couldn't try harder than that. After that experience, I have had more chats and I don't think I should have this port and I believe God doesn't want it for me right now. The risk of infection for me it just too great right now and I believe God has been protecting me from that. I am SO well and hardly ever have serious infections. I agree with my haem about the risk of infections with a port for me when I have lower neuts and white blood cells. They have always been low......but my body is well adapted to it and I am well, pretty much, all the time.
A port really worries me and even when I was about to go into surgery, I didn't feel 100% comfortable. Lots of FA patients with ports have injections to get their neuts to normal levels or close to so infection isn't as bad a problem and with my pre-leukaemia, this is not advisable. If I am having no problems with a neut count between 500 and 1500, then why treat with something that is dangerous. However, the port can be a problem when I sit at 500 or 400 and have freak drops to 200.
I am so glad that Alicia is doing better now. I know she is vulerable after a transplant and has a different line in but it frightened me to hear that her very high temperature and difficulties and stay in ICU was caused by an infection to her line. I think her white blood cell and neuts are higher than mine and she got this infection! I can't imagine how my body would deal with things when I have lower neuts and white blood cells. I do know that recovering from a transplant makes you vulnerable though. Michelle, we are praying for Alicia.
Anyway, the nurses seemed to handle the "no port" well yesterday and didn't yell or be pushy when they heard how a port can be more complicated for me. I do know that they wish I had a port though. I believe if God doesn't want me to have it for now, He will provide a solution. Miracles can happen and some supernatural stuff has been happening between God and my life which is way exciting. Why couldn't He heal my veins or cause me to not need IVIG for the rest of my life. Mircales do happen. You may not believe me if I told you the supernatural things happening in my life right now. What a joy to be a born-again Christian! When you ask for God to move in your life and tell Him you are serious, there is no end to what He can do and I know this is still only the beginning!
So to break out of my fear of using one vein I got them to experiment yesterday. I know my left arm is not good but there is a vein. It never gets used. Unfortunately, the nurse who was having a go yesterday was very tentative and I think the vein didn't pop up for her how it could have. Being a nurse myself, there are some things I would have changed about her technique for a difficult vein but I didn't want to tell her more than I was suggesting otherwise it is like I am taking over....hehe
So we ended up going for my right arm after she missed. It didn't even go in a vein. The usual nurse came then, who is a little more agressive but this is perfect for my veins. I showed her a place that I wanted which was close to the usual spot but a little further away to give the usual spot a rest and she did it! Yay! A tiny bit of bruising but at least that is all done for another month. I wait to see what God has in store. I don't feel too bad today. It is about 104 degrees F the last two days. For us Australians, that is 41 to 42 degrees Celsius. Today is a BIG fire warning day because of the intense wind and the hot weather. Tomorrow we are supposed to have a HUGE cool change! Yay!
So I told my head and neck oncologist about the problems with the surgeon and my head cancer site. He was "ozzed" as Alan and I would say. That means " thinks the surgeon is silly" but he said it in a real professional way. He doesn't want to waste time with a guy who is not going to take us seriously. So we are giving him one more go. I will make appointments with this surgeon every 3 weeks for my head. If my head is not acting up, I can cancel and if it is....I go and show him and he can't complain that I am trying to make him available to me 24 hours a day because I am making regular appoints so he can see. If this fails to work.....we are finding someone else. We don't have time to waste with someone who won't help and see the seriousness of keeping this under control.
We have been praying for my scar to be restored here at prayer meeting and if it doesn't act up again! That would be a miracle which wouldn't surprise me with the supernatural stuff going on.....good God stuff...... encourage you. If you want things to change in your life, call on Jesus....because He will do amazing supernatural things in your life. So many people are happy with life just going on as it is, the ocassional blessing.....but you can have so much more and I am just starting to learn that! My health is also being affected amazingly by God!!
Anyway, sorry....I am just excited! I still get down but have to remind myself about what God is doing.
ok, so that is all for today. Thanks for visiting and I will update you soon again!
Love Charisse
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