Hello People,
I had the CT scan on Friday last week and I got the results today. The good news is that the CT scan shows no inflammation in the lymph nodes or glands in the abdomen or the groin. So no evidence that the cancer has spread. Whoo Hoo!!!
However, I thought I would feel estatic after hearing this news. I was incredibly relieved but I still feel SO down. The oncologist was extremely nice. We had a good discussion. He had read the appropriate parts of the FA handbook and had my report from the cancer that had been removed.
He told me that the cancer was 1.2 mm deep which I knew. Apparently there is not really a chance of the cancer microscopicly breaking off into the lymph nodes when it is only 1mm deep. Once it gets over that, there is an approx 7% chance that the cancer has mircroscopicly broken off and entered the lymph nodes even if the CT scan is clear. So I suppose this is why I feel so down. It is such a SMALL chance but apparently the usual is to remove the groin lymph nodes as a precautionary measure even if there is no evidence with the Scan or on examination.
However, this can cause problems in the future, especially for a young woman. Swelling of the legs and groin, drainage problems and problems with dealing with infection. There is the risk of infection when having them removed and bleeding etc.
Of course, for someone like me who has not had a transplant and does have low neutrophils and platelets, it can complicate things. In the future, with low immunity and the groin lymph nodes gone, it can cause problems for infection because I already have low immunity.
They can highlight the lymph node that the area where the cancer was drains to first and only remove that one. Of course, you could have a false positive and end up removing perfectly good lymph nodes with no cancer and then still have complications later one. *sigh*
To be honest, I am feeling rather overwhelmed right now by all of FA. Really overwhelmed. I feel quite a bit depressed and I really want to cry.
Another option, because of the risks and complications for me, is to not remove the lymph nodes at all because the risk factor of spreading is only 7% and just to monitor the lymph nodes which is what I am doing for the head cancer I had out last year.
Obviously surveillance for vulva cancer now would be 3 monthly for me. Examination of lymph nodes and the vulva +/- vulvoscopy and an ultrasound of the groin lymph nodes. This is an option I am looking at.
Lymph node removal can be rather controversal because they can remove completely healthy lymph nodes with no cancer and cause further problems by doing so......because there is no evidence but the theoretical 7% of possible spreading due to the 1.2mm deep cancer rather than 1 mm.
Anyway, I am not fond of causing myself more problems. I am also not fond of having the cancer spread. If it was more like 30% or 50% or 90%, I would obviously have to be more drastic involving the lymph nodes but with 7% I am not too sure and I don't want to make the wrong decision!!!!! Decisions are CRAZY!!!
I have a gut feeling that it is not right to remove the lymph nodes for me and I should just have agressive surveillance like what I am doing with my head........although my surveillance with the gynae will be more agressive as the ultrasounds would also be done 3 monthly. My head MRI's are done annually....or was it 6 monthly....boy I can't remember.
I have given the oncologist the email of the gynae/oncol at the NIH in the States and told him I want us to work out what is best with their opinion in regards to an FA patient. I will also talk to her myself. They would see more FA patients.
As for the area that was excised. They got the full cancer out. However, there are pre-cancerous cells leading right out to the margin. So the margins were not clear and need to be. So I have to go back to surgery, have a vulvoscopy done to see if there is more dysplasia in other areas and how far it goes around the area excised already. They will remove the pre-cancerous cells left there and if there are other cells that are highlighted in different spots, they will biopsy those and we will wait for those results before cutting more *sigh* This could be rather extensive surgery. I am praying that it won't be *sigh*.
A tentative booking for surgery is the 24th July.
I have't got any bone marrow results back yet.
Anyway, I do praise God that the scans came back negative though. If they had come back positive I would be in more trouble! So even though I still feel overwhelmed and down, I have to admit, that is wonderful news and I am so grateful.
I think another part of me feels so down because if I had cut this out earlier as I thought I should...and acted on my feeling....then the cancer wouldn't be over 1mm deep and I wouldn't even have to deal with this lymph nodes stuff! *sigh*
Thanks to all your support. Thanks for praying, thanks for being there for me and thanks for your encouragement!!!
Keep praying!
Lots of love,
Charisse
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Tuesday, June 23, 2009
Sunday, May 17, 2009
My Birthday Today!
Hi All,
I turn 31 years old today. Pretty good for an FA person who has had 13 years of pre-leukaemia :-) While my birthday is definitely a time of celebration, it also is a time of sadness. Sometimes I tend to think about a lot when my birthday comes around.
However, I am actually really excited that it is my birthday and don't mind celebrating my birthday. To overcome all the bad things that FA has done in my life, I love to celebrate and be with people during my birthday because it helps me see how blessed I am to have gotten to this age and live the way I have and more.
Thank you to all who have wished me happy birthday and any presents you have given. So far, I love them all!!! Hehe
I have had a bit of a struggle this weekend. I saw a doctor on Friday and was given some news that upset my apple cart and caused my emotional rollercoaster to do more loops and all sorts. I cried a lot of that night and didn't fall asleep til around 3am. I am not going to share. Some things are too close to my heart. Sat I slept in til 1230pm because of my late settle the night before. I was so down and the tears were coming at intervals throughout Saturday that Alan decided we would go to the Beach House down by Glenelg beach with Isaac, Alan and myself. So we took a small amount of cash and went down there. Went on the VERY slow ferris wheel.....lol.....on a train, playground (Isaac did), ate some cheap dinner and went for a walk on the jetty and yes, it did cheer me up a bit. Alan said it was my birthday celebration. It was nice. On the way home we pulled up next to some fire works. They were in the city and right on the side of the road. We saw everything. It was a lovely finish to the evening.
Today I woke up and opened my presents from Alan and Isaac. I got a "Grey's Anatomy computer game"...hehe....and pink beanie, gloves, scarf and umbrella from Isaac. He knows me all too well :-) Then we went to church and there was a really good speaker at church. We came home and had a birthday lunch with my sister and her family. We had a cake that Alan and Isaac made. Sang happy birthday and blew out the candles. My mother in law, Denise, came and gave me a present as well....thank you. It was nice to see them all. My sister in law is taking me out for a hot chocolate tonight. I got plenty of messages and phone calls from my mum and dad in Africa! I love you!
Now, I do have photos but I am too tired to put then up right now.
Thanks for making my birthday special everyone. Oh, and on Friday night our friends Stephen and Leah came over for a pork roast and we played the CSI Miami Board game which was fun. That was a critical night since I had come home with particularly upsetting news from the doctor.
Thank you for celebrating my birthday everyone. Thank you for the messages on Facebook and email. The phone calls and the spending time together in person.
Wow, I am tired.
Now I saw my gynae doctor and my surgery to take this lump out from the lady area is booked for the 11th June. She doesn't think it is cancer but it will be checked anyway with pathology as per usual. She thinks it is some inflammatory granulotoma or something. I don't think that is the right word but I wasn't taking too much notice.....just asking if it was suspected cancer or not....hehe...so the second word I didn't really catch.
Pray for Isaac as we take him for his bloods tomorrow! That all goes well :-)
Ok, I am gonna go!
Love you and thanks,
Charisse
I turn 31 years old today. Pretty good for an FA person who has had 13 years of pre-leukaemia :-) While my birthday is definitely a time of celebration, it also is a time of sadness. Sometimes I tend to think about a lot when my birthday comes around.
However, I am actually really excited that it is my birthday and don't mind celebrating my birthday. To overcome all the bad things that FA has done in my life, I love to celebrate and be with people during my birthday because it helps me see how blessed I am to have gotten to this age and live the way I have and more.
Thank you to all who have wished me happy birthday and any presents you have given. So far, I love them all!!! Hehe
I have had a bit of a struggle this weekend. I saw a doctor on Friday and was given some news that upset my apple cart and caused my emotional rollercoaster to do more loops and all sorts. I cried a lot of that night and didn't fall asleep til around 3am. I am not going to share. Some things are too close to my heart. Sat I slept in til 1230pm because of my late settle the night before. I was so down and the tears were coming at intervals throughout Saturday that Alan decided we would go to the Beach House down by Glenelg beach with Isaac, Alan and myself. So we took a small amount of cash and went down there. Went on the VERY slow ferris wheel.....lol.....on a train, playground (Isaac did), ate some cheap dinner and went for a walk on the jetty and yes, it did cheer me up a bit. Alan said it was my birthday celebration. It was nice. On the way home we pulled up next to some fire works. They were in the city and right on the side of the road. We saw everything. It was a lovely finish to the evening.
Today I woke up and opened my presents from Alan and Isaac. I got a "Grey's Anatomy computer game"...hehe....and pink beanie, gloves, scarf and umbrella from Isaac. He knows me all too well :-) Then we went to church and there was a really good speaker at church. We came home and had a birthday lunch with my sister and her family. We had a cake that Alan and Isaac made. Sang happy birthday and blew out the candles. My mother in law, Denise, came and gave me a present as well....thank you. It was nice to see them all. My sister in law is taking me out for a hot chocolate tonight. I got plenty of messages and phone calls from my mum and dad in Africa! I love you!
Now, I do have photos but I am too tired to put then up right now.
Thanks for making my birthday special everyone. Oh, and on Friday night our friends Stephen and Leah came over for a pork roast and we played the CSI Miami Board game which was fun. That was a critical night since I had come home with particularly upsetting news from the doctor.
Thank you for celebrating my birthday everyone. Thank you for the messages on Facebook and email. The phone calls and the spending time together in person.
Wow, I am tired.
Now I saw my gynae doctor and my surgery to take this lump out from the lady area is booked for the 11th June. She doesn't think it is cancer but it will be checked anyway with pathology as per usual. She thinks it is some inflammatory granulotoma or something. I don't think that is the right word but I wasn't taking too much notice.....just asking if it was suspected cancer or not....hehe...so the second word I didn't really catch.
Pray for Isaac as we take him for his bloods tomorrow! That all goes well :-)
Ok, I am gonna go!
Love you and thanks,
Charisse
Wednesday, April 22, 2009
Isaac is a Trooper!
Hi All,
it is 1015pm. I got home from the hospital not long ago. Alan and Isaac are still there as Isaac is overnight tonight. I came home to make sure I got some good sleep. When I don't sleep well, I feel really tired and nasty ulcers come up. We decided that with our crazy lives right now, me being with Isaac tonight may not have been a good idea. Alan sleeps through anything pretty much so he stayed and I came home to tend to the 2 kitty cats and get some good sleep, only to go back in the morning to the hospital. Isaac should be coming home tomorrow.
The tonsillectomy went well. They also removed his adenoids. The surgeon came in later in the evening and said that there were no complications but that Isaac's tonsils were HUGE and the biggest he had ever seen! He also said that Isaac's adenoids were absolutely huge as well and no wonder he was obstructing! He said that Isaac will be able to sleep and breathe so much easier now. He also said the anaethetist was blown away when he was intubating Isaac. He said that the anaesthetist was pretty impressed by the size of his tonsils.....hehe.....so we definitely did the right thing in having them removed. He should have no problems with sleep apnoea now which means that all those issues he was having should resolve themselves now! Praise the Lord!
It was an interesting day. We got to the hospital at 12pm. Isaac had to fast from 7am and could drink water until 2 hours before the surgery time which was 2pm. So he stopped having stuff at about 11am when we left for the hospital. He was supposed to be 3rd on the list at first but that changed and he was further down the list which took his surgery to about 3.30pm or 4pm. Poor love, he had nothing to eat all that time! Nothing to drink from 11am! His surgery ended up being at 4.30pm! What a long time to wait for a little guy. I am impressed with how Isaac handled it all! We brought colouring in books and pencils. He got a colouring in book from his Aunty, Uncle and cousins for the occasion. We also brought an activity Bible which you read and do certain activities. He enjoyed that. He brought some cars and toys. Of course, he had his snuggly and his soft toys that he sleeps with.....and a new soft toy cat that he named "White" from his Aunty, Uncle and cousins as well :-)
While we waited for surgery, Isaac and I walked around the lovely garden and paths by the hospital. This is a private hospital and quite nice and quaint. We picked berries.....hehe.....but didn't eat them. Just as an activity. The type you are allowed to pick but not many. We explored the hospital. This kept him rather busy but around 3.30pm he started to say he was hungry and wanted something to eat. At 3.50pm I went to the nurses station and asked how long it would be and they said half hour. So I busied Isaac with something else. Alan was there too.
Every time the nurse came to chat, Isaac would get shy and not say much. When the anaesthetist came to visit him, he didn't really want to chat. However, he was so well behaved! We had heaps of chats about how he would go to sleep and that he would wake up with an IV drip and what that was for. Isaac usually freaks out over IV drips and tape.....anything sticky! He freaks! I was really worried! He becomes distressed when talking about it. We talked about the soreness afterwards and what they can do for that. SO he was prepared. His new toy cat talked a lot about it to in the days leading up to the surgery and today when Isaac wanted to talk about it.
Oh yes, the anaesthetist talked about how they usually give children a pre-med to settle them but with the degree of obstruction, there was the risk of Isaac obstructing here in the room and that becoming serious. He said that medication can cause them to obstruct like that. I understood and didn't want Isaac in danger so knew we just had to be gentle with him and understanding and reassuring and it was all fine in the end. I know that they have to do what is best for Isaac and I certainly don't want his breathing compromised before the surgery has even begun! They entertained him so well even though he couldn't have the pre-med.
So at 4.30pm they came in to take him down. I went with him. I felt like I wanted to be the one since Alan was staying the night with him. Isaac rode down on the bed and he said, "I have never been on a ride like this!". It was good to see him smile even though I could tell he was feeling uncertain. He asked questions all the way. When we got to holding bay he said, "what is this room" and I talked about it and what the nurses and doctors wear and so on. He was real quiet until they gave him a balloon and then he brightened up real excited like. That was a relief. I got gowned up and was telling him that mummy wears this stuff when she works as a nurse. So Isaac asked me about that and we talked. The doctor came to speak and smiled heaps and we went into the area where the operating rooms are. Isaac was heaps uncertain when he saw that room......a strange bed and equipement with people gowned up....no face masks yet. I carried him into the room and he asked, "what's this room?" with an uncertain look. I told him it was the operating room and look at all the stuff. I told him all about it and he was real interested. We sat on a chair beside the bed with Isaac on my lap. The anaesthetist was SO nice. I liked him a lot and that is saying a LOT! Haha! He talked to Isaac about everything. He had told Isaac about the mask and we had told Isaac too. So he showed him the mask and got me to have one of Isaac's arm under my arm and the other me hugging him to myself so that I had his arms securely but like a hug instead of holding down. Isaac's head was on my chest and he was relaxed. The anaesthetist told Isaac to breathe the mask and right now he had no colours in it. (the doctor was asking Isaac's favourite colours. For example, red....what does red smell like? Then he would add the smell to the anaesthetic). So Isaac was talking about colours and the doctor said he was now going to add that colour smell to the gas and "can you smell it, Isaac? Do you think that smells like the colour red? How about this smell? Do you think this smells like the colour yellow?" Each time he added a smell the anaesthetic got increased. Isaac was happy to have him hold the mask up which I was surprised but Isaac was distracted by me tickling his arm and hugging him and the conversation of the anaesthetist. Then the doctor said he was going to add the colour blue like on the mask. He asked Isaac if he can smell it and Isaac said in a joking kind of voice, "noooo....hehe....I can't smell blue because it is on the outside of the mask!". He wriggled his hand out and pointed to the colour on the outside and we all told him how clever he was and then within seconds his eyes rolled back and he started to snore. In those moments when you feel your child totally relax and see their eyes roll back and the colour and them twitch, you feel real weird and you see how vulnerable your baby is. So I was trying to hold back the tears. They got me to lift him on the bed with some help. He looked so vulnerable on the bed and the anaesthetist asked me if I wanted to kiss Isaac on the face before leaving and I said yes.....he lifted the mask and I kissed him. Then a nurse showed me out and put her arm around me and asked me if I was ok. They were SO nice and I was REALLY impressed. I mean, when I had my surgery done at this hospital they handled my anxieties SO well. I was VERY impressed! I turned to the anaesthetist before leaving and said, "take care of my baby" and he said he would with a smile. SO sweet.
I started the walk back to the ward and in the elevator I had tears forming and was trying not to bawl my eyes out. I got to Isaac's room and was holding back the tears. I felt silly and I did snap at Alan and am sorry for that. I just felt SO teary about my sweet baby being so vulnerable and needed to do something so I didn't worry about him the whole time. So Alan and I went for dinner. It was 5pm when I got back to Alan. We went over to a cafe in the women's and children's which is across the road and not long after we finished our meal, they called us to tell us Isaac was back! That was quick. SO we hurried back and he was in his room, VERY sleepy but there. He opened his eyes and a few tears. I wanted to hold him so badly but the nurse was busy with him and Alan was on the other side. I wanted to cry when I saw him start to cry a little.
Whoah....the feelings that a mother experiences! It is crazy! Once the nurse moved I wasted NO time sitting next to Isaac and caressing him. He enjoyed a tickle on his arm and his throat was sore. He asked if his tonsils were gone and he had a few tears when I said yes. He had his drip in, bandaged with bright red, rubber bandage. He saw it and we explained but he didn't freak! He was SO brave! He has the drip in all night and he accepted that. He kept it under his covers and said he didn't want to see it. Before I left he was getting used to it and smiling more. He had eaten a full sandwich and had some ice-cream and a chocolate milk. I sure hope he doesn't throw up but he hadn't felt like throwing up. I made sure he was given pain relief only moments after being on the ward and that helped. He hasn't spat any blood up! He hasn't vomited!
The doctor warned us that his voice could get higher in pitch when everything was removed. Well, I already notice it! Isaac isn't nasally anymore and his voice is higher in pitch. The doctor said his voice is now how it should be. He sounds SO cute and clear.
Tomorrow he will have his IV out and he is scared about that. I want to make sure they use something to help the sticky tape off without it hurting because he is petrified and started to wimper over it tonight. He hates tape.....I think from having it when he was so young and premie.....bad experiences with tape and soreness and stickiness.
Oh, something that was cute. He had changed into the cute, little gown they gave him and he was walking around. Two nurses saw him and said how gorgeous he is. They then said to Isaac that he looked so cute in his gown. Alan was standing behind Isaac and Isaac turned around, rolled his eyes and smiled a funny, embarrassed smile as if those nurses are SO ozzy or silly....haha. It was funny.
Another funny. I was asking Isaac whether he remembered the man talking about smelling the colours from the mask and he said, "yep, but those smells were a bit stinky and they are not from anywhere in this world!!!" I laughed out loud and agreed that the gas stinks and that they don't really smell like the colours the doctor was talking about! He acted like the doctor was real silly for thinking those stinky smells were anything like the colours he was talking about! Hehe
So I suppose I should go to bed. I can't wait to be with Isaac tomorrow again. It was a success and I pray that Isaac sleeps well and feels good tomorrow to be able to go home.
Thanks for praying for him.
Love Charisse
it is 1015pm. I got home from the hospital not long ago. Alan and Isaac are still there as Isaac is overnight tonight. I came home to make sure I got some good sleep. When I don't sleep well, I feel really tired and nasty ulcers come up. We decided that with our crazy lives right now, me being with Isaac tonight may not have been a good idea. Alan sleeps through anything pretty much so he stayed and I came home to tend to the 2 kitty cats and get some good sleep, only to go back in the morning to the hospital. Isaac should be coming home tomorrow.
The tonsillectomy went well. They also removed his adenoids. The surgeon came in later in the evening and said that there were no complications but that Isaac's tonsils were HUGE and the biggest he had ever seen! He also said that Isaac's adenoids were absolutely huge as well and no wonder he was obstructing! He said that Isaac will be able to sleep and breathe so much easier now. He also said the anaethetist was blown away when he was intubating Isaac. He said that the anaesthetist was pretty impressed by the size of his tonsils.....hehe.....so we definitely did the right thing in having them removed. He should have no problems with sleep apnoea now which means that all those issues he was having should resolve themselves now! Praise the Lord!
It was an interesting day. We got to the hospital at 12pm. Isaac had to fast from 7am and could drink water until 2 hours before the surgery time which was 2pm. So he stopped having stuff at about 11am when we left for the hospital. He was supposed to be 3rd on the list at first but that changed and he was further down the list which took his surgery to about 3.30pm or 4pm. Poor love, he had nothing to eat all that time! Nothing to drink from 11am! His surgery ended up being at 4.30pm! What a long time to wait for a little guy. I am impressed with how Isaac handled it all! We brought colouring in books and pencils. He got a colouring in book from his Aunty, Uncle and cousins for the occasion. We also brought an activity Bible which you read and do certain activities. He enjoyed that. He brought some cars and toys. Of course, he had his snuggly and his soft toys that he sleeps with.....and a new soft toy cat that he named "White" from his Aunty, Uncle and cousins as well :-)
While we waited for surgery, Isaac and I walked around the lovely garden and paths by the hospital. This is a private hospital and quite nice and quaint. We picked berries.....hehe.....but didn't eat them. Just as an activity. The type you are allowed to pick but not many. We explored the hospital. This kept him rather busy but around 3.30pm he started to say he was hungry and wanted something to eat. At 3.50pm I went to the nurses station and asked how long it would be and they said half hour. So I busied Isaac with something else. Alan was there too.
Every time the nurse came to chat, Isaac would get shy and not say much. When the anaesthetist came to visit him, he didn't really want to chat. However, he was so well behaved! We had heaps of chats about how he would go to sleep and that he would wake up with an IV drip and what that was for. Isaac usually freaks out over IV drips and tape.....anything sticky! He freaks! I was really worried! He becomes distressed when talking about it. We talked about the soreness afterwards and what they can do for that. SO he was prepared. His new toy cat talked a lot about it to in the days leading up to the surgery and today when Isaac wanted to talk about it.
Oh yes, the anaesthetist talked about how they usually give children a pre-med to settle them but with the degree of obstruction, there was the risk of Isaac obstructing here in the room and that becoming serious. He said that medication can cause them to obstruct like that. I understood and didn't want Isaac in danger so knew we just had to be gentle with him and understanding and reassuring and it was all fine in the end. I know that they have to do what is best for Isaac and I certainly don't want his breathing compromised before the surgery has even begun! They entertained him so well even though he couldn't have the pre-med.
So at 4.30pm they came in to take him down. I went with him. I felt like I wanted to be the one since Alan was staying the night with him. Isaac rode down on the bed and he said, "I have never been on a ride like this!". It was good to see him smile even though I could tell he was feeling uncertain. He asked questions all the way. When we got to holding bay he said, "what is this room" and I talked about it and what the nurses and doctors wear and so on. He was real quiet until they gave him a balloon and then he brightened up real excited like. That was a relief. I got gowned up and was telling him that mummy wears this stuff when she works as a nurse. So Isaac asked me about that and we talked. The doctor came to speak and smiled heaps and we went into the area where the operating rooms are. Isaac was heaps uncertain when he saw that room......a strange bed and equipement with people gowned up....no face masks yet. I carried him into the room and he asked, "what's this room?" with an uncertain look. I told him it was the operating room and look at all the stuff. I told him all about it and he was real interested. We sat on a chair beside the bed with Isaac on my lap. The anaesthetist was SO nice. I liked him a lot and that is saying a LOT! Haha! He talked to Isaac about everything. He had told Isaac about the mask and we had told Isaac too. So he showed him the mask and got me to have one of Isaac's arm under my arm and the other me hugging him to myself so that I had his arms securely but like a hug instead of holding down. Isaac's head was on my chest and he was relaxed. The anaesthetist told Isaac to breathe the mask and right now he had no colours in it. (the doctor was asking Isaac's favourite colours. For example, red....what does red smell like? Then he would add the smell to the anaesthetic). So Isaac was talking about colours and the doctor said he was now going to add that colour smell to the gas and "can you smell it, Isaac? Do you think that smells like the colour red? How about this smell? Do you think this smells like the colour yellow?" Each time he added a smell the anaesthetic got increased. Isaac was happy to have him hold the mask up which I was surprised but Isaac was distracted by me tickling his arm and hugging him and the conversation of the anaesthetist. Then the doctor said he was going to add the colour blue like on the mask. He asked Isaac if he can smell it and Isaac said in a joking kind of voice, "noooo....hehe....I can't smell blue because it is on the outside of the mask!". He wriggled his hand out and pointed to the colour on the outside and we all told him how clever he was and then within seconds his eyes rolled back and he started to snore. In those moments when you feel your child totally relax and see their eyes roll back and the colour and them twitch, you feel real weird and you see how vulnerable your baby is. So I was trying to hold back the tears. They got me to lift him on the bed with some help. He looked so vulnerable on the bed and the anaesthetist asked me if I wanted to kiss Isaac on the face before leaving and I said yes.....he lifted the mask and I kissed him. Then a nurse showed me out and put her arm around me and asked me if I was ok. They were SO nice and I was REALLY impressed. I mean, when I had my surgery done at this hospital they handled my anxieties SO well. I was VERY impressed! I turned to the anaesthetist before leaving and said, "take care of my baby" and he said he would with a smile. SO sweet.
I started the walk back to the ward and in the elevator I had tears forming and was trying not to bawl my eyes out. I got to Isaac's room and was holding back the tears. I felt silly and I did snap at Alan and am sorry for that. I just felt SO teary about my sweet baby being so vulnerable and needed to do something so I didn't worry about him the whole time. So Alan and I went for dinner. It was 5pm when I got back to Alan. We went over to a cafe in the women's and children's which is across the road and not long after we finished our meal, they called us to tell us Isaac was back! That was quick. SO we hurried back and he was in his room, VERY sleepy but there. He opened his eyes and a few tears. I wanted to hold him so badly but the nurse was busy with him and Alan was on the other side. I wanted to cry when I saw him start to cry a little.
Whoah....the feelings that a mother experiences! It is crazy! Once the nurse moved I wasted NO time sitting next to Isaac and caressing him. He enjoyed a tickle on his arm and his throat was sore. He asked if his tonsils were gone and he had a few tears when I said yes. He had his drip in, bandaged with bright red, rubber bandage. He saw it and we explained but he didn't freak! He was SO brave! He has the drip in all night and he accepted that. He kept it under his covers and said he didn't want to see it. Before I left he was getting used to it and smiling more. He had eaten a full sandwich and had some ice-cream and a chocolate milk. I sure hope he doesn't throw up but he hadn't felt like throwing up. I made sure he was given pain relief only moments after being on the ward and that helped. He hasn't spat any blood up! He hasn't vomited!
The doctor warned us that his voice could get higher in pitch when everything was removed. Well, I already notice it! Isaac isn't nasally anymore and his voice is higher in pitch. The doctor said his voice is now how it should be. He sounds SO cute and clear.
Tomorrow he will have his IV out and he is scared about that. I want to make sure they use something to help the sticky tape off without it hurting because he is petrified and started to wimper over it tonight. He hates tape.....I think from having it when he was so young and premie.....bad experiences with tape and soreness and stickiness.
Oh, something that was cute. He had changed into the cute, little gown they gave him and he was walking around. Two nurses saw him and said how gorgeous he is. They then said to Isaac that he looked so cute in his gown. Alan was standing behind Isaac and Isaac turned around, rolled his eyes and smiled a funny, embarrassed smile as if those nurses are SO ozzy or silly....haha. It was funny.
Another funny. I was asking Isaac whether he remembered the man talking about smelling the colours from the mask and he said, "yep, but those smells were a bit stinky and they are not from anywhere in this world!!!" I laughed out loud and agreed that the gas stinks and that they don't really smell like the colours the doctor was talking about! He acted like the doctor was real silly for thinking those stinky smells were anything like the colours he was talking about! Hehe
So I suppose I should go to bed. I can't wait to be with Isaac tomorrow again. It was a success and I pray that Isaac sleeps well and feels good tomorrow to be able to go home.
Thanks for praying for him.
Love Charisse
Tuesday, April 21, 2009
Tonsillectomy Confirmed for Tomorrow
Hi All,
took Isaac to see the ENT today and he said Isaac's tonsils are real big and definitely obstructing his breathing. Isaac definitely has sleep apnoea issues. He asked us loads of questions in regards to Isaac. Like, his behaviour, whether he was a restless sleeper, did he wet the bed still at age 6, is his a mouth breather, what is he like when he eats, how well does he grow and put on weight. All of that stuff.
Well Isaac has not put on weight in 6 months which I thought was odd and the doctor also thought was weird. He doesn't grow fast at all. He still wets his pull ups heaps even though we restrict his fluids to no more after 6 to 6.30pm. We also take him for 2 toilet stops during the evening while he is asleep as well as before bed.....and he still wets quite a lot! I always thought that was odd. He has trouble eating with his mouth closed. Also, at school and home I have noticed that he seems "young" for his age and thought it was always because he was premature by 13 weeks which can happen. At school he has trouble focusing and is always needing a sleep or huge rest around lunch time and after. He has been running around like crazy as well.
Guess what??? Sleep apnoea has been linked to excessive bed wetting. The doctor tells me that most children stop wetting once the obstruction is removed....his tonsils and adenoids. We should be able to help him with this bed wetting now. At the moment, because of the sleep apnoea, the adrenal glands are stimulated somehow and then the kidneys and so he wees without any control no matter how many times you take him to the toilet in the middle of the night! I won't go into the chemical reasons as to why the adrenal gland is stimulated or anything like that.
Also, because of the sleep apnoea and working so hard to get oxygen, Isaac sleeps restlessly, not allowing him enough rest and recovery from his day, making him tired and he doesn't concentrate. His cognitive development is affected because his brain isn't getting the time out. So the doctor said he can be delayed and seem "younger" than he is.....didn't I say that we thought Isaac was younger????
Also, the sleep apnoea causes the brain to suppress the growth hormone at night. Children do most of their growing then and so they don't gain weight or grow properly......and Isaac has trouble with his weight.....another connection.
Another thing is because he mouth breathes at night because of obstruction, his jaw has taken on a certain shape, and his teeth have crossed over or something at the back, because of how he holds his mouth. The doctor said this will correct itself once the tonsils are removed and he can breathe.
While eating he can't breathe so he has needed to have his mouth open and i used to feel frustrated that he wouldn't eat with his mouth closed. He hasn't been able to help it because of how big his tonsils are......he will be able to breathe again once they are out!
So Isaac will be sleeping better, less wetting during the night (hopefully none at all), develop properly in growth and cognitively and grow up a bit and be able to concentrate at school and calm down....and have plenty of rest and restoration during his sleep!
He is booked in for tomorrow (Wed) and we have to be at the hospital at 12pm and surgery starts at 2pm. He is about 4th on the list. Youngest child to eldest. I am pleased we are getting this all worked out. Wait til the teacher hears about all this! May be they will stop pestering me about Isaac and things will calm down.
Please pray things go well.
Thanks for checking in!
Love Charisse
took Isaac to see the ENT today and he said Isaac's tonsils are real big and definitely obstructing his breathing. Isaac definitely has sleep apnoea issues. He asked us loads of questions in regards to Isaac. Like, his behaviour, whether he was a restless sleeper, did he wet the bed still at age 6, is his a mouth breather, what is he like when he eats, how well does he grow and put on weight. All of that stuff.
Well Isaac has not put on weight in 6 months which I thought was odd and the doctor also thought was weird. He doesn't grow fast at all. He still wets his pull ups heaps even though we restrict his fluids to no more after 6 to 6.30pm. We also take him for 2 toilet stops during the evening while he is asleep as well as before bed.....and he still wets quite a lot! I always thought that was odd. He has trouble eating with his mouth closed. Also, at school and home I have noticed that he seems "young" for his age and thought it was always because he was premature by 13 weeks which can happen. At school he has trouble focusing and is always needing a sleep or huge rest around lunch time and after. He has been running around like crazy as well.
Guess what??? Sleep apnoea has been linked to excessive bed wetting. The doctor tells me that most children stop wetting once the obstruction is removed....his tonsils and adenoids. We should be able to help him with this bed wetting now. At the moment, because of the sleep apnoea, the adrenal glands are stimulated somehow and then the kidneys and so he wees without any control no matter how many times you take him to the toilet in the middle of the night! I won't go into the chemical reasons as to why the adrenal gland is stimulated or anything like that.
Also, because of the sleep apnoea and working so hard to get oxygen, Isaac sleeps restlessly, not allowing him enough rest and recovery from his day, making him tired and he doesn't concentrate. His cognitive development is affected because his brain isn't getting the time out. So the doctor said he can be delayed and seem "younger" than he is.....didn't I say that we thought Isaac was younger????
Also, the sleep apnoea causes the brain to suppress the growth hormone at night. Children do most of their growing then and so they don't gain weight or grow properly......and Isaac has trouble with his weight.....another connection.
Another thing is because he mouth breathes at night because of obstruction, his jaw has taken on a certain shape, and his teeth have crossed over or something at the back, because of how he holds his mouth. The doctor said this will correct itself once the tonsils are removed and he can breathe.
While eating he can't breathe so he has needed to have his mouth open and i used to feel frustrated that he wouldn't eat with his mouth closed. He hasn't been able to help it because of how big his tonsils are......he will be able to breathe again once they are out!
So Isaac will be sleeping better, less wetting during the night (hopefully none at all), develop properly in growth and cognitively and grow up a bit and be able to concentrate at school and calm down....and have plenty of rest and restoration during his sleep!
He is booked in for tomorrow (Wed) and we have to be at the hospital at 12pm and surgery starts at 2pm. He is about 4th on the list. Youngest child to eldest. I am pleased we are getting this all worked out. Wait til the teacher hears about all this! May be they will stop pestering me about Isaac and things will calm down.
Please pray things go well.
Thanks for checking in!
Love Charisse
Saturday, April 18, 2009
Tonsilectomy
Hi All,
well, the paed agreed that the sleep apnoea theory sounds correct. So I took Isaac to the GP and got a referral and we spoke to the ENT office where I go for FA screening and they have someone there who does children. Isaac has an appointment to see him on Tuesday afternoon and they have already booked his surgery to take the tonsils out on Wednesday coming on the 1pm list. Isaac will stay at least one night in hospital. This is big for Isaac as he freaks out over things with hospital. I think memories from being a premie baby. He had to go through a lot and had heaps of tape on his face and as a result is overly terrified of hospital things and bandaides and so on. We have had some good chats though. Isaac said he is nervous and a bit scared but he seems to understand why he has to have a tonsilectomy and that it should make him feel much better. He seems comfortable that nurses like mummy will give him pain medication to help with it hurting. The IV drip is something we are still working through. He is terrified. Tonight it seemed like he might allow it without kicking up a fuss. We will talk more about it though and help him see why he would need it.
So that happened all so fast. I managed to switch my nursing shift from Wed when Isaac's surgery is to Friday. So that is good.
Mum and dad go to Africa for 6 weeks on Tuesday. However, I am not worried as I have good support from Alan and our private nanny and my mother-in-law (other mother). Thanks Guys!
Well, I am going to bed. The paed said that we are hoping this tonsilectomy will solve problems by allowing him to breathe better and get proper rest. If his tiredness continues more tests will be done to find out why as it is unusual that he is so tired with 11 to 12 hour sleep at night. I thought I would also get his eyes checked to see if that could be related to any tiredness and lack of concentration. This will all get worked out.
Thanks for your support! Everyone.....thanks.
Love Charisse
well, the paed agreed that the sleep apnoea theory sounds correct. So I took Isaac to the GP and got a referral and we spoke to the ENT office where I go for FA screening and they have someone there who does children. Isaac has an appointment to see him on Tuesday afternoon and they have already booked his surgery to take the tonsils out on Wednesday coming on the 1pm list. Isaac will stay at least one night in hospital. This is big for Isaac as he freaks out over things with hospital. I think memories from being a premie baby. He had to go through a lot and had heaps of tape on his face and as a result is overly terrified of hospital things and bandaides and so on. We have had some good chats though. Isaac said he is nervous and a bit scared but he seems to understand why he has to have a tonsilectomy and that it should make him feel much better. He seems comfortable that nurses like mummy will give him pain medication to help with it hurting. The IV drip is something we are still working through. He is terrified. Tonight it seemed like he might allow it without kicking up a fuss. We will talk more about it though and help him see why he would need it.
So that happened all so fast. I managed to switch my nursing shift from Wed when Isaac's surgery is to Friday. So that is good.
Mum and dad go to Africa for 6 weeks on Tuesday. However, I am not worried as I have good support from Alan and our private nanny and my mother-in-law (other mother). Thanks Guys!
Well, I am going to bed. The paed said that we are hoping this tonsilectomy will solve problems by allowing him to breathe better and get proper rest. If his tiredness continues more tests will be done to find out why as it is unusual that he is so tired with 11 to 12 hour sleep at night. I thought I would also get his eyes checked to see if that could be related to any tiredness and lack of concentration. This will all get worked out.
Thanks for your support! Everyone.....thanks.
Love Charisse
Friday, February 20, 2009
No Port now...and other updates :-)
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
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
Thursday, January 15, 2009
Port surgery cancelled
Hi All,
well I fasted and went to the hospital today for the insertion of my port. I really had to pysch myself up for this surgery.
To be honest, I have not really wanted this surgery and have "Settled" for an abdo port because you cannot see it. Otherwise, I feel uncomfortable even talking about a port. This morning I felt pretty vulnerable about the whole thing and pushed myself to get to the hospital, sit there and be admitted and so on.
Well just before the anaesthetist is about to put in my jelco, the surgeon asked for Alan and I to come in the room for a chat. I had already seen him once. Turns out my neutrophils did a freak drop.....that is what I am calling it before I am never usually under 500...and usually 1000 or closer to it. My counts from yesterday came back and my neuts were only 200! I was shocked. So of course, surgery got cancelled because infection is too dangerous with a port. *sigh* I felt confused because I was relieved that I didn't have to have the port and then panicked about the low count....and some other counts bothered me too. SO I must admit that I have had some good tears today.
Now the port is delayed for at least 2 weeks! I don't want it anyway :-(
I just wish I didn 't have FA. Yep, can you tell...I feel real negative and upset today. Usually I can have such a good outlook but I am struggling today. I don't want low counts....I don't want to die from FA.....I don't want to experience a transplant with all the trauma that happens.....I don't want anything to do with cancer. I don't want anything to do with ANYTHING about FA. I feel agressive and upset. I don't want a port.........FA is SO debilitating. Sometimes the FEAR is unbelievable.
I wish I didn't have FA. I want so badly to be a normal person who can do normal things and not live with a fear inside all the time. I hate watching for counts as to whether they are normal or not. I don't like the options that us FA people have with medical science. They are not exactly great options. Oh yes, I appreciate the research that happens. However, it is still hurtful to our bodies and the process of "getting help" with FA problems is emotional and depressing.....and just because I have not had a transplant doesn't mean I don't experience life and death decisions.....or experience facing death.
I dislike pre-leukaemia and low counts and I dislike transplant and what it does it you. I am sad that my brother died a month after his transplant. I feel sad.
I am fed up that medical science cannot cure this thing. Only God can you know...........us humans will never understand the complexity of the human body no matter how hard we try. There may be a cure one day but we are not God....Jesus is God and He knows.... someone might think that discouraging and in a way it is, because medical science cannot help without hurting ......but I have to believe that God knows everything about my body and can fix it even when doctors have no idea. He is in control. Although today I don't feel it.
I write a lot on this blog but there are some huge things I don't share. I have a very close walk with Jesus and I am plodding along through this FA stuff, trying to achieve things that FA doctors tell me I cannot. My future with FA from a medical person's view is bleak but my future from God's point of view is full and bright and exciting.
I believe Jesus can heal. I believe He has asked me to keep pressing and I will because no medical science gives me hope like Jesus does. I believe Jesus heals a lot through medical science but boy, in my life time, I have seen miraculous healings too! Without a doubt. I really have guys....I have witnessed with my own eyes....big things......blood diseases and stuff....miraculous! It does happen!
My heart bleeds sometimes with everything going on. Today, I know God must be in control but I feel so angry at people. You don't wish someone to have FA but sometimes thoughts are so strong when you feel so closed in. I don't want it. I want a bright future and I want more children and I want to be free of FA problems.
Why should I settle for things that hurt me to fix FA stuff? Is that the best I can do for my future? No, I can have so much more. I believe I can! I REALLY feel this! Why should we settle for all of that FA stuff being the best we can do????? I want to go for greater things and with Jesus' help, I know it is possible.
I know, I know....many people will read this and just think it is venting! This is more than venting.....these are deep things in my heart...and I am only scrapping the surface. Some people may say, "get real",.......but you know what? I dislike it when people think that I am only talking Christian jargon.....because I am not...Jesus has more for me than this. I won't give up. It is real people. It is real. He has already revealed interesting things with FA and my life.
Hmm...I don't know if I even stayed on track with what I was first discussing?
FA is frustrating. Life can be frustrating but I will run on in the race....not just plod. Thanks for hanging in there through my entry :-)
Love Charisse
well I fasted and went to the hospital today for the insertion of my port. I really had to pysch myself up for this surgery.
To be honest, I have not really wanted this surgery and have "Settled" for an abdo port because you cannot see it. Otherwise, I feel uncomfortable even talking about a port. This morning I felt pretty vulnerable about the whole thing and pushed myself to get to the hospital, sit there and be admitted and so on.
Well just before the anaesthetist is about to put in my jelco, the surgeon asked for Alan and I to come in the room for a chat. I had already seen him once. Turns out my neutrophils did a freak drop.....that is what I am calling it before I am never usually under 500...and usually 1000 or closer to it. My counts from yesterday came back and my neuts were only 200! I was shocked. So of course, surgery got cancelled because infection is too dangerous with a port. *sigh* I felt confused because I was relieved that I didn't have to have the port and then panicked about the low count....and some other counts bothered me too. SO I must admit that I have had some good tears today.
Now the port is delayed for at least 2 weeks! I don't want it anyway :-(
I just wish I didn 't have FA. Yep, can you tell...I feel real negative and upset today. Usually I can have such a good outlook but I am struggling today. I don't want low counts....I don't want to die from FA.....I don't want to experience a transplant with all the trauma that happens.....I don't want anything to do with cancer. I don't want anything to do with ANYTHING about FA. I feel agressive and upset. I don't want a port.........FA is SO debilitating. Sometimes the FEAR is unbelievable.
I wish I didn't have FA. I want so badly to be a normal person who can do normal things and not live with a fear inside all the time. I hate watching for counts as to whether they are normal or not. I don't like the options that us FA people have with medical science. They are not exactly great options. Oh yes, I appreciate the research that happens. However, it is still hurtful to our bodies and the process of "getting help" with FA problems is emotional and depressing.....and just because I have not had a transplant doesn't mean I don't experience life and death decisions.....or experience facing death.
I dislike pre-leukaemia and low counts and I dislike transplant and what it does it you. I am sad that my brother died a month after his transplant. I feel sad.
I am fed up that medical science cannot cure this thing. Only God can you know...........us humans will never understand the complexity of the human body no matter how hard we try. There may be a cure one day but we are not God....Jesus is God and He knows.... someone might think that discouraging and in a way it is, because medical science cannot help without hurting ......but I have to believe that God knows everything about my body and can fix it even when doctors have no idea. He is in control. Although today I don't feel it.
I write a lot on this blog but there are some huge things I don't share. I have a very close walk with Jesus and I am plodding along through this FA stuff, trying to achieve things that FA doctors tell me I cannot. My future with FA from a medical person's view is bleak but my future from God's point of view is full and bright and exciting.
I believe Jesus can heal. I believe He has asked me to keep pressing and I will because no medical science gives me hope like Jesus does. I believe Jesus heals a lot through medical science but boy, in my life time, I have seen miraculous healings too! Without a doubt. I really have guys....I have witnessed with my own eyes....big things......blood diseases and stuff....miraculous! It does happen!
My heart bleeds sometimes with everything going on. Today, I know God must be in control but I feel so angry at people. You don't wish someone to have FA but sometimes thoughts are so strong when you feel so closed in. I don't want it. I want a bright future and I want more children and I want to be free of FA problems.
Why should I settle for things that hurt me to fix FA stuff? Is that the best I can do for my future? No, I can have so much more. I believe I can! I REALLY feel this! Why should we settle for all of that FA stuff being the best we can do????? I want to go for greater things and with Jesus' help, I know it is possible.
I know, I know....many people will read this and just think it is venting! This is more than venting.....these are deep things in my heart...and I am only scrapping the surface. Some people may say, "get real",.......but you know what? I dislike it when people think that I am only talking Christian jargon.....because I am not...Jesus has more for me than this. I won't give up. It is real people. It is real. He has already revealed interesting things with FA and my life.
Hmm...I don't know if I even stayed on track with what I was first discussing?
FA is frustrating. Life can be frustrating but I will run on in the race....not just plod. Thanks for hanging in there through my entry :-)
Love Charisse
Saturday, January 10, 2009
My Head
Hello Everyone,
well we have been busy here. It is still the summer, school holidays. We have 3 weeks more of holidays. In total, Isaac will have had 7 weeks school holidays at the end of all that! Wow! I have thoroughly LOVED having him home. Usually mums tell you that they get restless and tired with the kids being at home. I have not experienced this these holidays at all. Isaac has been so well behaved and we have done so many interesting things. Isaac is not ready to go back to school yet either. He has told me that. He isn't even bored! I hope that he feels ready to go back in 3 weeks. I want him home but he will have to start school in 3 weeks. I hope he feels ready!
So this past Friday I had my IVIG infusion and it went really well. I am not feeling too bad. Yesterday I felt rather shaky and I have a bit of a headache and leg pain but otherwise I am ok.
My head scar is healing up ok. I have been having a bit of trouble with it though. For anyone who doesn't know, I had a small, cancerous sweat gland tumor removed from there some months ago.....4 or 5 months ago. The top of the scar is still quite sore and I get a sharp pain that goes down into my head. About 1 cm of the scar there is very tender and seems to weep easily. It doesn't bleed but stuff builds up a little and then gets really sore and then feels moist and I can hardly touch it! So I told the doctor about it on Friday and he looked at it again. He said it is not acting quite normal. He is a head and neck oncologist. The rest of the scar is fine and healing well. Still a little tender but not untouchable. He is concerned something is going on there. He said that my scalp could be just really tender and delayed in healing with FA and stuff....or that there is a stitch still stuck underneath there causing this problem or that there could be abnormal cell activity going on again......the cancer. So he wants me to go back and see the surgeon to get an opinion and he wants to wait 4 more weeks to see if it settles and if it doesn't he would like the surgeon to re-open the wound to see what is going on. He said that this should be done to see if a stitch is festering under there as well....and in the mean time they would take a biopsy to check for cancer again. So re-opening it would be the key. That means another surgery which I felt a bit sad about :-(
So please pray for a good outcome there.
This Friday is my surgery date for the infusa port going into my abdo. Everything is organised and there is no reason why that shouldn't go well.
Now we have been up to quite a bit here with it being so hot. Below you can see Alan and Isaac taking a swim in my parents' pool! Lovely!
We went on a trip to the Museum with Isaac's best friend from school. Both families.....ours and theirs went and it was lovely. They had a special expedition about dinosaurs on top of the usual museum stuff :-) Isaac saw this panda bear and has been sleeping with it and babying it ever since we got it for him.....so cute!
Here are the kids having hands on fun at the museum, learning about "digging" up fossilised eggs and stuff.
I think the expedition was fun! What a cool photo!
Just before New Years in 2008 we went to the river with Darren and Angela, Alan's brother and financee. It was a lot of fun. Angela brought her dingy which had a hole in it by my bottom and we paddled around in it with water up to our waists!! Haha....hence the look on our faces! It was a windy day and we had to work hard while rowing! I laughed a lot!
Alan caught a fish.......not a huge one. One of the kids caught the biggest but the fish got away. These are Carp which are a nuisance and so you cannot throw them back in even if they are babies....shame
Isn't this a beautiful shot? By our little cabin by the river?
On to other activities. Alan and I went to a friend's wedding. We got all dressed up fancy like...hehe.....I didn't realise this picture isn't so big!
Ha! Jumping back to the cabins at the river.....aren't they cute?
Ah yes, now jumping back to the wedding. All dressed up! Alan and I on the left.
My sister and I going to our friend's kitchen tea which was a High Tea, a couple of days before. I felt all prettied up then as well :-)
So that is just some of the stuff we have been up to :-)
well we have been busy here. It is still the summer, school holidays. We have 3 weeks more of holidays. In total, Isaac will have had 7 weeks school holidays at the end of all that! Wow! I have thoroughly LOVED having him home. Usually mums tell you that they get restless and tired with the kids being at home. I have not experienced this these holidays at all. Isaac has been so well behaved and we have done so many interesting things. Isaac is not ready to go back to school yet either. He has told me that. He isn't even bored! I hope that he feels ready to go back in 3 weeks. I want him home but he will have to start school in 3 weeks. I hope he feels ready!
So this past Friday I had my IVIG infusion and it went really well. I am not feeling too bad. Yesterday I felt rather shaky and I have a bit of a headache and leg pain but otherwise I am ok.
My head scar is healing up ok. I have been having a bit of trouble with it though. For anyone who doesn't know, I had a small, cancerous sweat gland tumor removed from there some months ago.....4 or 5 months ago. The top of the scar is still quite sore and I get a sharp pain that goes down into my head. About 1 cm of the scar there is very tender and seems to weep easily. It doesn't bleed but stuff builds up a little and then gets really sore and then feels moist and I can hardly touch it! So I told the doctor about it on Friday and he looked at it again. He said it is not acting quite normal. He is a head and neck oncologist. The rest of the scar is fine and healing well. Still a little tender but not untouchable. He is concerned something is going on there. He said that my scalp could be just really tender and delayed in healing with FA and stuff....or that there is a stitch still stuck underneath there causing this problem or that there could be abnormal cell activity going on again......the cancer. So he wants me to go back and see the surgeon to get an opinion and he wants to wait 4 more weeks to see if it settles and if it doesn't he would like the surgeon to re-open the wound to see what is going on. He said that this should be done to see if a stitch is festering under there as well....and in the mean time they would take a biopsy to check for cancer again. So re-opening it would be the key. That means another surgery which I felt a bit sad about :-(
So please pray for a good outcome there.
This Friday is my surgery date for the infusa port going into my abdo. Everything is organised and there is no reason why that shouldn't go well.
Now we have been up to quite a bit here with it being so hot. Below you can see Alan and Isaac taking a swim in my parents' pool! Lovely!
We went on a trip to the Museum with Isaac's best friend from school. Both families.....ours and theirs went and it was lovely. They had a special expedition about dinosaurs on top of the usual museum stuff :-) Isaac saw this panda bear and has been sleeping with it and babying it ever since we got it for him.....so cute!
Here are the kids having hands on fun at the museum, learning about "digging" up fossilised eggs and stuff.
I think the expedition was fun! What a cool photo!
Just before New Years in 2008 we went to the river with Darren and Angela, Alan's brother and financee. It was a lot of fun. Angela brought her dingy which had a hole in it by my bottom and we paddled around in it with water up to our waists!! Haha....hence the look on our faces! It was a windy day and we had to work hard while rowing! I laughed a lot!
Alan caught a fish.......not a huge one. One of the kids caught the biggest but the fish got away. These are Carp which are a nuisance and so you cannot throw them back in even if they are babies....shame
Isn't this a beautiful shot? By our little cabin by the river?
On to other activities. Alan and I went to a friend's wedding. We got all dressed up fancy like...hehe.....I didn't realise this picture isn't so big!
Ha! Jumping back to the cabins at the river.....aren't they cute?
Ah yes, now jumping back to the wedding. All dressed up! Alan and I on the left.
My sister and I going to our friend's kitchen tea which was a High Tea, a couple of days before. I felt all prettied up then as well :-)
So that is just some of the stuff we have been up to :-)Please pray for me as I have my port inserted and my head looked at. Life has been exciting and continues to be.
Until next time!
Love Charisse
Wednesday, December 3, 2008
Surgical Update!
Hello All,
I thought I would update you on the abdo port surgery. We managed to get hold of the haematologists at the women's and children's hospital where I was diagnosed with FA and spent most of my "medical life". We also have good contacts there with Fanconi Anaemia Australia and the doctors. They recommended a Private Paed Surgeon to me. It just happened to be the first paed surgeon who my adult oncologist recommended for the abdo port in the first place. What happened was...the adult secretary rang to book me in with the paed secretary and they asked my age and since it was 30 they closed the door right there. This was a couple of weeks ago.
Isn't it always the way that if you do the ring around yourself you always get a bit further with the doctors? Alan is a good ring a rounderer (I know, not a word :-) ).
Anyway, so this is the same paed surg. However, Alan rang and told the secretary who we are and all about the port issue and she was very compassionate and understanding. The paed surg got in contact with Alan this afternoon and said that he is happy to do the surgery on me and insert the abdo port. He does it all the time and it isn't complicated! He said I can have it where ever I want, as long as there is some rib there to anchor it! This is great news. Alan says he sounds very nice. He knows what he is doing and it is no problems. So he told Alan what to say to the other adult surgeon when he rang ton cancel that surgery. I really wanted that other surgeon to know how he had made me feel. I think he will understand how I felt with the change in doctor . For the sake of the adult surgeon too.....if he is not certain about the surgery then it is best that he doesn't try it. I know that he is apparently the best adult surg but he didn't make me feel very comfortable. I am sure he could do the surgery but I think it is better to go to the paed surgeon who is a pro at doing these ports....and my age doesn't matter! Yay! I am feeling much better about this.
So tomorrow at 2.15pm I meet this paed surgeon and find out my new surgery date! Praise the Lord!
Love ya all,
Charisse
I thought I would update you on the abdo port surgery. We managed to get hold of the haematologists at the women's and children's hospital where I was diagnosed with FA and spent most of my "medical life". We also have good contacts there with Fanconi Anaemia Australia and the doctors. They recommended a Private Paed Surgeon to me. It just happened to be the first paed surgeon who my adult oncologist recommended for the abdo port in the first place. What happened was...the adult secretary rang to book me in with the paed secretary and they asked my age and since it was 30 they closed the door right there. This was a couple of weeks ago.
Isn't it always the way that if you do the ring around yourself you always get a bit further with the doctors? Alan is a good ring a rounderer (I know, not a word :-) ).
Anyway, so this is the same paed surg. However, Alan rang and told the secretary who we are and all about the port issue and she was very compassionate and understanding. The paed surg got in contact with Alan this afternoon and said that he is happy to do the surgery on me and insert the abdo port. He does it all the time and it isn't complicated! He said I can have it where ever I want, as long as there is some rib there to anchor it! This is great news. Alan says he sounds very nice. He knows what he is doing and it is no problems. So he told Alan what to say to the other adult surgeon when he rang ton cancel that surgery. I really wanted that other surgeon to know how he had made me feel. I think he will understand how I felt with the change in doctor . For the sake of the adult surgeon too.....if he is not certain about the surgery then it is best that he doesn't try it. I know that he is apparently the best adult surg but he didn't make me feel very comfortable. I am sure he could do the surgery but I think it is better to go to the paed surgeon who is a pro at doing these ports....and my age doesn't matter! Yay! I am feeling much better about this.
So tomorrow at 2.15pm I meet this paed surgeon and find out my new surgery date! Praise the Lord!
Love ya all,
Charisse
Wednesday, July 23, 2008
Tomorrow is the Day!
Hello All,
tomorrow is almost here. It is 6.30pm at night. Tomorrow I will have surgery to take this sebaceous carcinoma of the scalp out of my head. We have all been praying that this tumor is only small. I go in at 0830 in the morning and have some support platelets as a precaution and then I am booked for 0930 but they will probably be late in getting me in. I will be surprised if they are not late. They will also take out this suspcious spot on my hand.......
I have been working on Wednesdays lately and that has provided a good distraction for me. I have needed it because I have been a bit down. I was very overwhelmed by this tumor even though it is small. I had to put my life plans on hold a little bit. I felt very discouraged. I am extremely nervous about tomorrow. I sure hope they don't go crazy with shaving my hair off. I want them to be conservative....and I will tell them again and again tomorrow to be careful because even though hair grows back, long hair is pretty special to me......it is all about how it makes you feel. I don't need to feel horrible about myself anymore than I do. *sigh*
Well, I have some pictures of when I spoke to the reception/year 1 class about nursing. I won't put up too many of them but at least you can get the jist. I didn't take the photos, the class teacher had permission to do so.
I spoke to the class about what nurses do and brought some things with me so they could interact. I had my stethoscope and some children were able to listen to their own hearts. The picture below is of me bandaging my "patient's" arm. Hehe. On the chair is a dressing pack that I brought from work. It is not sterile on the chair but they got the idea of how we set it out and use it and clean someone's wound with it. I showed them all of that and demonstrated on my patient how to clean and dress a wound.
Hehe.....I have got more photos but there are many children in the photos so I didn't want to put them all up. This is an action photo of me....hehe....my face is strange because I am talking about nursing. Hehe. I am wearing my uniform which is hard to determine in these photos but you get the general idea.
Anyway, it was fun.
tomorrow is almost here. It is 6.30pm at night. Tomorrow I will have surgery to take this sebaceous carcinoma of the scalp out of my head. We have all been praying that this tumor is only small. I go in at 0830 in the morning and have some support platelets as a precaution and then I am booked for 0930 but they will probably be late in getting me in. I will be surprised if they are not late. They will also take out this suspcious spot on my hand.......
I have been working on Wednesdays lately and that has provided a good distraction for me. I have needed it because I have been a bit down. I was very overwhelmed by this tumor even though it is small. I had to put my life plans on hold a little bit. I felt very discouraged. I am extremely nervous about tomorrow. I sure hope they don't go crazy with shaving my hair off. I want them to be conservative....and I will tell them again and again tomorrow to be careful because even though hair grows back, long hair is pretty special to me......it is all about how it makes you feel. I don't need to feel horrible about myself anymore than I do. *sigh*
Well, I have some pictures of when I spoke to the reception/year 1 class about nursing. I won't put up too many of them but at least you can get the jist. I didn't take the photos, the class teacher had permission to do so.
I spoke to the class about what nurses do and brought some things with me so they could interact. I had my stethoscope and some children were able to listen to their own hearts. The picture below is of me bandaging my "patient's" arm. Hehe. On the chair is a dressing pack that I brought from work. It is not sterile on the chair but they got the idea of how we set it out and use it and clean someone's wound with it. I showed them all of that and demonstrated on my patient how to clean and dress a wound.
Hehe.....I have got more photos but there are many children in the photos so I didn't want to put them all up. This is an action photo of me....hehe....my face is strange because I am talking about nursing. Hehe. I am wearing my uniform which is hard to determine in these photos but you get the general idea.
Anyway, it was fun.Well, Teresa Clifton has her baby! A baby girl.....Violet Rose I think. Congratulations to the Cliftons! If you want to read their site, the address is:
It is always exciting when a new baby comes into the family!
Thank you for the constant support from everyone. I am going to go. It is time for dinner. I have helped Isaac with some homework...sight words but I need to help him with one more thing before bed.
Love ya,
Charisse
Tuesday, January 22, 2008
30 Hours Post Surgery
I arrived at the hospital at 10:30am so that I could have my support platelet transfusion at 12pm sharp. Surgery was booked for 1:30pm, but the staff were so disorganised (even through my private surgeon had spent ages organising everything for them--with platelets available for a 12pm transfusion), the nurses still took forever to get the platelets down to the surgical suite... I had them 1 hour late, and not only that, when the nurse went to put them up she pierced the bag and platelets dribbled all over the wall, my arm, my chair and continue to trickle down the line.... I immediately started to panic!!! Worrying that I was loosing precious platelets on the floor rather than going into my veins!!
they taped the bag up with Opsite (sterile tape) and continued to run the rest into me. however, isaac who was watching with Alan from the side became somewhat distressed and wanted to leave as I was panicking and there was several nurses crowding around trying to stop the debacle.
I finally went to surgery at 2:30pm.... they decided to give a second bag of platelets while I was under just in case.
The surgery went very well, and I am in my room on the ward recovering. My surgeon saw me today, and she said the procedure was a complete success and I didn't bleed much at all.
I had somewhat of a rough day today, as I did not seem to get my pain under control very well. I had a patient-controlled analgesia machine (containing Morphine), but spent most of the day with a pain score of 8/10 (10 being the worse pain ever!!)..
I also had what felt like a completely incompetent nurse in the early shift today, who really irritated me. I had high anxiety for most of the day, as she seemed to push me into getting out of bed, and race me off to the shower all without giving my head a chance to stop spinning!! Furthermore, she came in to take bloods and didn't even allow me to prepare myself, which resulted in me getting distressed... THEN after giving up on the bloods, she was around the other side of the bed within the same breath to yank out my catheter!!! At that point, both Alan and I insisted she stop and give me a chance to prepare..... I braced myself and the job was done. Most people would know that I am a very private person and need time to prepare myself to allow people to do invasive procedures on me like this. To say the least, I felt traumatised by the time her shift was over, and cried.
My surgery scar is as impressive as my original C-section, which is about 15cm long and at the moment just hurts! I found out more interesting stuff about my insides which relates to FA but I'm not up to sharing that right now.
Tonight I am off the Patient Controlled Analgesia (Morphine pump) and now on sub-cup Morphine and strong oral medication for pain relief.
I have not bruised much so far and am stable. I don't know how long I will stay in hospital--possibly 1 week.
Thank you for checking up on me. I will write another update soon.
Love Charisse
Friday, January 18, 2008
Great News! Surgery still booked for Monday!
Things have been going well. I had my pre-anaesthetic appointment on Thursday morning. Anaesthetists are so strange whether you work with them as a nurse or are the patient. They have NO idea about some things and panic real easily....which is what they did with me once they found out I have FA and lower counts. They would not believe me that everything is organised and under control. I panicked because they paniced and Alan rang my surgeon and she said that everything is under control and that she had everything planned and went through the plan with us! She told me not to worry about the anaesthetists because she will be bossing them around! I am happy with the plan and my haematologist has spoken with Julie myOB/Gynae/surgeon and they have things worked out...no need to panic.
I saw my "gloomy doctor" yesterday afternoon and he was really good. Alan had spoken to him about not being so "gloomy" and letting "Charisse feel confident about going forward"....so yes, the risks are important but since the decision is made even though the risks...it is time to support. He did support me yesterday and said nothing negative. In fact...I got some great results that totally threw him off guard and I LOVE watching the doctor be perplexed and confused. Usually with FA and other bone marrow disorders that fail....the platelets have a shorter life span and become damaged and old easily and we have old platelets in our blood mostly more than young and fresh ones...it is part of what happens with the marrow failing but the doctor was SO surprised and perplexed to have the test come back that I have majority of young and fresh platelets in my system as opposed to the old and ineffcient ones. My platelets are efficient and work better than someone who usually has low counts. Somehow...he says...they are being made more efficiently and because they are young...they are more efficient even though the count is lower at times....my platelets do not act like "lower count".......for me at the stage of my marrow...lots of chromosome changes in the past and a slight increase in blast count the last couple of years...this is amazing...and the doctor is quite surprised. After he sat there so perplexed Alan said, "so this is a positive surprise" and he looked up and said, "yes, this is positive and I am not so concerned about the surgery with these results"......obviously still risks to surgery and someone with FA but this is amazing. I still think that medical science doesn't have the answer to everything and that there is a God and that God does do miracles and positive things in our lives.....interesting don't you think...I am very happy with these results.
The doctor said, "I suppose I won't say good luck because it is not appropriate"...implying that there is also bad luck so I dared to say...hehe...."but you can pray for me!". He looked at me and smiled...he smiled..the gloomy doctor smiled...hehe..and I said, "monday, 1.30pm put on your calendar....be deep in prayer for Charisse"...he then laughed and said, "yes, deep in prayer". So I came away feeling much better with that appointment and feeling like he actually was supporting me through this despite the risks and feeling more positive...and actually positive about my dreams and stuff for this year.
Anyway, one day til my operation now. Monday I go into the Womens and childrens hospital to be admitted at 1030am. I am supposed to have my supportive platelet transfusion around 12pm and then the surgery is booked for 1.30pm. I am probably in there for a week and will keep you updated as to how I am going after surgery.
Thanks for praying for me.
Love Charisse
I saw my "gloomy doctor" yesterday afternoon and he was really good. Alan had spoken to him about not being so "gloomy" and letting "Charisse feel confident about going forward"....so yes, the risks are important but since the decision is made even though the risks...it is time to support. He did support me yesterday and said nothing negative. In fact...I got some great results that totally threw him off guard and I LOVE watching the doctor be perplexed and confused. Usually with FA and other bone marrow disorders that fail....the platelets have a shorter life span and become damaged and old easily and we have old platelets in our blood mostly more than young and fresh ones...it is part of what happens with the marrow failing but the doctor was SO surprised and perplexed to have the test come back that I have majority of young and fresh platelets in my system as opposed to the old and ineffcient ones. My platelets are efficient and work better than someone who usually has low counts. Somehow...he says...they are being made more efficiently and because they are young...they are more efficient even though the count is lower at times....my platelets do not act like "lower count".......for me at the stage of my marrow...lots of chromosome changes in the past and a slight increase in blast count the last couple of years...this is amazing...and the doctor is quite surprised. After he sat there so perplexed Alan said, "so this is a positive surprise" and he looked up and said, "yes, this is positive and I am not so concerned about the surgery with these results"......obviously still risks to surgery and someone with FA but this is amazing. I still think that medical science doesn't have the answer to everything and that there is a God and that God does do miracles and positive things in our lives.....interesting don't you think...I am very happy with these results.
The doctor said, "I suppose I won't say good luck because it is not appropriate"...implying that there is also bad luck so I dared to say...hehe...."but you can pray for me!". He looked at me and smiled...he smiled..the gloomy doctor smiled...hehe..and I said, "monday, 1.30pm put on your calendar....be deep in prayer for Charisse"...he then laughed and said, "yes, deep in prayer". So I came away feeling much better with that appointment and feeling like he actually was supporting me through this despite the risks and feeling more positive...and actually positive about my dreams and stuff for this year.
Anyway, one day til my operation now. Monday I go into the Womens and childrens hospital to be admitted at 1030am. I am supposed to have my supportive platelet transfusion around 12pm and then the surgery is booked for 1.30pm. I am probably in there for a week and will keep you updated as to how I am going after surgery.
Thanks for praying for me.
Love Charisse
Monday, January 14, 2008
24 Hour Post Transfusion
Hi Guys,
well I had my count done 24 hours post and got the results today. I am disappointed that the platelets didn't stay up in the 100'000s for ever...hehe....but they came down to 69 000 which the haematologist is happy with...he said that my platelets responded just like they are supposed to and that with my counts that go up and down....these are not a problem. They were 88 before the transfusion and 109 after and then 24 hour post they were at 69...who knows if that is just my own count or part of the transfusion but I am told it doesn't matter...although I like it when my count is in the 80's or 90's when it is just me.....but this is ok for post. The doctor said that platelets can go higher with different transfusions and that platelets can be all over the place with how high they go up and how well they hold and how your body responds but they responded well and the other tests came back with NO antibodies so there should be no reason why I won't respond well on the day when they give me a transfusion an hour before surgery. I suppose platelets can vary so much from day to day. I have had 30 000 difference in platelets from one day to another before...sometimes it is weird like that and then most times it is pretty stable.
Alan actually spoke to the "gloomy" doctor today on the phone. I am sure he would be so happy that I call him that. He feels that we have minimised the risk of bleeding for the surgery but harped on about infection and it being the "luck" of the draw...that is what he said the other day to me. I was actually very pleased with my neuts this time around...they were at 1300 and I think that is good! I know, I know....not normal and risk of infection is a very real possibility but I have seen that my neuts can respond to infection so that is encouraging. The doctor just wants me to be very clear about all the risks but I am starting to feel overwhelmed. I have planned for this surgery and had to deal with risks for Isaac's C-section when I had him...I need to deal with the risks here and I UNDERSTAND!!!!! The more I focus on the risks the more anxious I feel....I am informed and I need this doctor to back off a bit and give me some space....because I want to be able to go into my surgery feeling a little positive about it....if I am totally freaked out and negative....how do you make it through major surgery......having FA is about informed risk all the time...sometimes you can't do anything about the risks but you decide that it is worth the risk and take it...some doctors will not understand and some will....this one also has difficulty with people not choosing transplant....some will choose it because it is appropriate and some will not because it is not appropriate....the risk to my life is the same if I not transplant now to if I transplant now....so what do you do? It is hard to always focus on the risks and stuff of the decisions you make because sometimes either road is not nice.
One week to surgery.......it will be good to have it off my mind. For 5 years I have put this thing off because of risks and being anxious.....for 5 years I have not been able to put it to the side and not worry about it......so I am going to go ahead.
I went to the Christian book shop today and bought 2 new books to read while recovering. I love reading.
I am also explaining more to Isaac about what mummy is getting fixed to prepare him so that he doesn't panic too much and I am trusting in God to get me through even though I feel nervous.
Isaac starts school in 3 weeks. My baby is growing up! Reception...can you believe it? Today we went to check out the school uniform because he is going to a private school. The pants are SO big! Too big to just "move the button" like I was thinking originally.....I think he will need pants made especially for him. He has such a little waist. I only have 3 weeks to get this all organised and Alan tells me not to worry ...it will be done.
Ok, so I have updated and am now going to go. Oh...on Thursday I have a pre-anaesthetic appointment and on Friday a final appointment with the haematologist...I sure hope he doesn't scare me only 2 days before the procedure...I don't know if I can sit in another appointment and talk about all the risks again!!!!!
OK, got to go!
Love Charisse
well I had my count done 24 hours post and got the results today. I am disappointed that the platelets didn't stay up in the 100'000s for ever...hehe....but they came down to 69 000 which the haematologist is happy with...he said that my platelets responded just like they are supposed to and that with my counts that go up and down....these are not a problem. They were 88 before the transfusion and 109 after and then 24 hour post they were at 69...who knows if that is just my own count or part of the transfusion but I am told it doesn't matter...although I like it when my count is in the 80's or 90's when it is just me.....but this is ok for post. The doctor said that platelets can go higher with different transfusions and that platelets can be all over the place with how high they go up and how well they hold and how your body responds but they responded well and the other tests came back with NO antibodies so there should be no reason why I won't respond well on the day when they give me a transfusion an hour before surgery. I suppose platelets can vary so much from day to day. I have had 30 000 difference in platelets from one day to another before...sometimes it is weird like that and then most times it is pretty stable.
Alan actually spoke to the "gloomy" doctor today on the phone. I am sure he would be so happy that I call him that. He feels that we have minimised the risk of bleeding for the surgery but harped on about infection and it being the "luck" of the draw...that is what he said the other day to me. I was actually very pleased with my neuts this time around...they were at 1300 and I think that is good! I know, I know....not normal and risk of infection is a very real possibility but I have seen that my neuts can respond to infection so that is encouraging. The doctor just wants me to be very clear about all the risks but I am starting to feel overwhelmed. I have planned for this surgery and had to deal with risks for Isaac's C-section when I had him...I need to deal with the risks here and I UNDERSTAND!!!!! The more I focus on the risks the more anxious I feel....I am informed and I need this doctor to back off a bit and give me some space....because I want to be able to go into my surgery feeling a little positive about it....if I am totally freaked out and negative....how do you make it through major surgery......having FA is about informed risk all the time...sometimes you can't do anything about the risks but you decide that it is worth the risk and take it...some doctors will not understand and some will....this one also has difficulty with people not choosing transplant....some will choose it because it is appropriate and some will not because it is not appropriate....the risk to my life is the same if I not transplant now to if I transplant now....so what do you do? It is hard to always focus on the risks and stuff of the decisions you make because sometimes either road is not nice.
One week to surgery.......it will be good to have it off my mind. For 5 years I have put this thing off because of risks and being anxious.....for 5 years I have not been able to put it to the side and not worry about it......so I am going to go ahead.
I went to the Christian book shop today and bought 2 new books to read while recovering. I love reading.
I am also explaining more to Isaac about what mummy is getting fixed to prepare him so that he doesn't panic too much and I am trusting in God to get me through even though I feel nervous.
Isaac starts school in 3 weeks. My baby is growing up! Reception...can you believe it? Today we went to check out the school uniform because he is going to a private school. The pants are SO big! Too big to just "move the button" like I was thinking originally.....I think he will need pants made especially for him. He has such a little waist. I only have 3 weeks to get this all organised and Alan tells me not to worry ...it will be done.
Ok, so I have updated and am now going to go. Oh...on Thursday I have a pre-anaesthetic appointment and on Friday a final appointment with the haematologist...I sure hope he doesn't scare me only 2 days before the procedure...I don't know if I can sit in another appointment and talk about all the risks again!!!!!
OK, got to go!
Love Charisse
Friday, January 11, 2008
Success SO far!
Hello All,
today was the day! I had my platelet trial and my IVIG infusion. It was such a long day. Despite the fact that the doctor who I talked about being gloomy in the last entry...he said he would ring my doctor at the center and tell him about the trial and what he wanted to do...well he didn't and we rang because we didn't trust him and we told the doctor about it all....he took the other doctor's mobile and he didn't answer so none of them got to speak to each other. So my doctor at the specialist center re-ordered all the matching and cross matching stuff and I waited for 3 hours for my specific blood type platelets to come! We were there from 1030 and they started the platelets at 2pm...just one bag. Well I was so happy to recieve good counts for before the transfusion. My platelets were 88 000...which is so good. Before I was sick with pneumonia they hit 90 000 and then I got sick and they dropped - well they are headed up again. I had no reactions to the platelets as they went in. I was so scared. Then an hour after the transfusion we tested and it had gone into the 100 000's which is excellent! That is where we need them for this surgery.......my body responded! I still have not spoken to my other doctor who get sgloomy...who know what he will be gloomy about...it didn't rise to over 200 000's maye be and that is not as good as he would like...I seem to be able to imagine what he would say but that does not change the fact that they said they need my platelets to be able to rise to the 100 000' and I did. In 24 hours post transfusion I will have another test for platelets to see how long the platelets last so they can judge how much time they have with surgery and needing platelets to maintain for healing. If my platelets stay where they are right now without the transfusion it will be fine for healing and I should heal well....I am SO relieved and happy it went well. I got home at 7.30pm tonight after the infusion and have been really tired. I have usual reactions with infusion....tired, foggy brain, sore and achey limbs and restlessness.....feeling vague...but it will be ok. I usually wake up in the morning really shaky and stuff. it is normal for me.
So that was my day...another step til the surgery. only 9 more days and I will reach another milestone.
We had prayer meeting last night and it was most powerful. God moved powerfully and spoke individually to people. Jesus encouraged me last night with lots and lots. I won't go through them but He is truely amazing people. If you knwo Jesus....He is truely amazing through the good and the bad and He cares! I was powerful.
Well, I will update again when I hear the new news about 24 hours post transfusion and where we stand there. Thanks guys...thanks for the support. This week I got a lot of email support and guetbook support and it has been great. It has helped me face this head on...thank you...I really need that support more than anything because this is huge.
Lots of love,
Charisse
today was the day! I had my platelet trial and my IVIG infusion. It was such a long day. Despite the fact that the doctor who I talked about being gloomy in the last entry...he said he would ring my doctor at the center and tell him about the trial and what he wanted to do...well he didn't and we rang because we didn't trust him and we told the doctor about it all....he took the other doctor's mobile and he didn't answer so none of them got to speak to each other. So my doctor at the specialist center re-ordered all the matching and cross matching stuff and I waited for 3 hours for my specific blood type platelets to come! We were there from 1030 and they started the platelets at 2pm...just one bag. Well I was so happy to recieve good counts for before the transfusion. My platelets were 88 000...which is so good. Before I was sick with pneumonia they hit 90 000 and then I got sick and they dropped - well they are headed up again. I had no reactions to the platelets as they went in. I was so scared. Then an hour after the transfusion we tested and it had gone into the 100 000's which is excellent! That is where we need them for this surgery.......my body responded! I still have not spoken to my other doctor who get sgloomy...who know what he will be gloomy about...it didn't rise to over 200 000's maye be and that is not as good as he would like...I seem to be able to imagine what he would say but that does not change the fact that they said they need my platelets to be able to rise to the 100 000' and I did. In 24 hours post transfusion I will have another test for platelets to see how long the platelets last so they can judge how much time they have with surgery and needing platelets to maintain for healing. If my platelets stay where they are right now without the transfusion it will be fine for healing and I should heal well....I am SO relieved and happy it went well. I got home at 7.30pm tonight after the infusion and have been really tired. I have usual reactions with infusion....tired, foggy brain, sore and achey limbs and restlessness.....feeling vague...but it will be ok. I usually wake up in the morning really shaky and stuff. it is normal for me.
So that was my day...another step til the surgery. only 9 more days and I will reach another milestone.
We had prayer meeting last night and it was most powerful. God moved powerfully and spoke individually to people. Jesus encouraged me last night with lots and lots. I won't go through them but He is truely amazing people. If you knwo Jesus....He is truely amazing through the good and the bad and He cares! I was powerful.
Well, I will update again when I hear the new news about 24 hours post transfusion and where we stand there. Thanks guys...thanks for the support. This week I got a lot of email support and guetbook support and it has been great. It has helped me face this head on...thank you...I really need that support more than anything because this is huge.
Lots of love,
Charisse
Saturday, January 5, 2008
Platelet Transufions/Surgery
Well, not long to go now and I have my surgery. It is only 14 days until this surgery. It is corrective surgery. I have been planning it for a long time and so many things have gotten in the way.
So Friday I had my haematologist appointment. My platelet count needs "back up" for this surgery. It is a big surgery. I can handle smaller procedures and every day life with my platelet count but I really need help with this surgery. They will be cutting me open and it is not a small incision. I have been told it will be a reasonable size. I have only ever had one platelet transfusion in my life that I am aware of and it was when I was 17 years old. I had a reaction to the drug, quinine, and it knocked out my whole CBC count and I went into acute kidney failure. When I was 17 the platelets held well and I only had to have one.....in that instance my platelet count dropped from about 150 000 to only 8000. I remember my eyes haemorrhaging...interesting....got side tracked.
So I went to my haematologist and had convinced myself that it is ok that I need to have the platelets because I am not good with medical intervention and I become freaked out and upset that I need it. I even delayed surgery a while back because I couldn't cope with the idea of needing some platelets but got over that....still feel weird but it is ok and I am excited about the surgery because it means a lot. I went into the appointment feeling positive and my doctor...who has not seen me for about 12 months and is always telling me he never gets my bloods starts to tell me about how some people don't respond to platelet transfusions at all...and I could be that person....blah, blah, blah...and if this happens then everything that you have planned for this year is down the toilet and blah, blah, blah and am I prepared for this. He then said...doesn't matter how well I responded to the one when I was 17 ...because platelet eating antibodies may have developed over time and you may not respond and can't have surgery or do any of this other stuff. He then told me there was no reason to wonder this with my bloods because nothing tells him this but be prepared! I felt like he crushed my spirit altogether. I sat there, quietly, my heart pounding, dread building up and feeling like I was going to throw up. Some doctors can give you all the scenarios...both good and bad and seem like they are not crushing your hopes and dreams and your spirit...some just seem to have the knack to crush you. My other doctor who I miss SO MUCH was very good with chatting to me. He would tell me the good and what we have planned and what to expect and then he would tell me the odds of anything bad happening and then he would add....."however, let's deal with that if it happens and just focus on what we have planned right now"...and I would feel good and have hope. He even told me he never wanted me to have my hope crushed because how would I ever survive a life with FA if I had no hope or dreams. He was really good. This other doctor...he seems to forget all about that and just focus on the bad stuff....and there is not really anything exciting about FA to focus on! Let's face it.....bone marrow failure, pre-leukaemia, the expectation of how long your life will be once you get to my stage....cancers...blah, blah, blah...when a doctor decides to sit down and really tell you or remind you about FA....it is quite devastating. I told this doctor that I am always taking risks ....otherwise I would live in a box with FA and never have a life! He said that is true.....so instead of just asuming that I would go badly with a platelet transfusion like I felt he was saying....I will have all the HLA matching and blood grouping and all of that done tomorrow...I will even test for antibodies against platelets and my clotting ability and on Friday I will have a trial of how effective a platelet transfusion is for me. We will check how far the platelets rose an hour after and 24 hours after. That way when I go for my surgery we will know the timing of stuff and feel more confident. I need to do this because I have not had a platelet transfusion since being 17 and have no idea how I will respond. After the platelets I will have my normal IVIG infusion...after the hour blood test. Apparently IVIG infusions can also increase your platelet count falsely....so we need to do the platelet stuff because I infuse that so we have an accurate number. Then I should know how well I go that day. I pray so much that my body responds well and doesn't do any of that stuff that the doctor describes! That all sounds frightening. Then on the 21st...which is a Monday I will hopefully go in during the morning and have the transfusion about an hour or so before the surgery and have the surgery. I will be recovering in hospital for at least a week....depending on how well I go...may be another one. However, I may recover really well!
So I hope it all goes to plan!
This is the excitment in our lives so far. I will keep you all updated and try and update you all during the surgery (well not literally while I am asleep).
Ok, thanks for checking in and all your support!
On a social chat ...yesterday Alan, isaac and I went to the beach. We were there from about 1pm to 5.30pm. It was hot yet so nice at the beach. We took 2 umbrellas and our deck chairs to sit on and covered ourselves with so much sunscreen. The water was BEAUTIFUL!!!! I didn't want to get out. Isaac has really grown up and enjoyed the water. It was a calm day. We were on the perfect beach with had the surf life savers right near us and we swam within the flags....it wasn't the main beach so not many people were there. It was perfect!
Well better be off!
Love Charisse
So Friday I had my haematologist appointment. My platelet count needs "back up" for this surgery. It is a big surgery. I can handle smaller procedures and every day life with my platelet count but I really need help with this surgery. They will be cutting me open and it is not a small incision. I have been told it will be a reasonable size. I have only ever had one platelet transfusion in my life that I am aware of and it was when I was 17 years old. I had a reaction to the drug, quinine, and it knocked out my whole CBC count and I went into acute kidney failure. When I was 17 the platelets held well and I only had to have one.....in that instance my platelet count dropped from about 150 000 to only 8000. I remember my eyes haemorrhaging...interesting....got side tracked.
So I went to my haematologist and had convinced myself that it is ok that I need to have the platelets because I am not good with medical intervention and I become freaked out and upset that I need it. I even delayed surgery a while back because I couldn't cope with the idea of needing some platelets but got over that....still feel weird but it is ok and I am excited about the surgery because it means a lot. I went into the appointment feeling positive and my doctor...who has not seen me for about 12 months and is always telling me he never gets my bloods starts to tell me about how some people don't respond to platelet transfusions at all...and I could be that person....blah, blah, blah...and if this happens then everything that you have planned for this year is down the toilet and blah, blah, blah and am I prepared for this. He then said...doesn't matter how well I responded to the one when I was 17 ...because platelet eating antibodies may have developed over time and you may not respond and can't have surgery or do any of this other stuff. He then told me there was no reason to wonder this with my bloods because nothing tells him this but be prepared! I felt like he crushed my spirit altogether. I sat there, quietly, my heart pounding, dread building up and feeling like I was going to throw up. Some doctors can give you all the scenarios...both good and bad and seem like they are not crushing your hopes and dreams and your spirit...some just seem to have the knack to crush you. My other doctor who I miss SO MUCH was very good with chatting to me. He would tell me the good and what we have planned and what to expect and then he would tell me the odds of anything bad happening and then he would add....."however, let's deal with that if it happens and just focus on what we have planned right now"...and I would feel good and have hope. He even told me he never wanted me to have my hope crushed because how would I ever survive a life with FA if I had no hope or dreams. He was really good. This other doctor...he seems to forget all about that and just focus on the bad stuff....and there is not really anything exciting about FA to focus on! Let's face it.....bone marrow failure, pre-leukaemia, the expectation of how long your life will be once you get to my stage....cancers...blah, blah, blah...when a doctor decides to sit down and really tell you or remind you about FA....it is quite devastating. I told this doctor that I am always taking risks ....otherwise I would live in a box with FA and never have a life! He said that is true.....so instead of just asuming that I would go badly with a platelet transfusion like I felt he was saying....I will have all the HLA matching and blood grouping and all of that done tomorrow...I will even test for antibodies against platelets and my clotting ability and on Friday I will have a trial of how effective a platelet transfusion is for me. We will check how far the platelets rose an hour after and 24 hours after. That way when I go for my surgery we will know the timing of stuff and feel more confident. I need to do this because I have not had a platelet transfusion since being 17 and have no idea how I will respond. After the platelets I will have my normal IVIG infusion...after the hour blood test. Apparently IVIG infusions can also increase your platelet count falsely....so we need to do the platelet stuff because I infuse that so we have an accurate number. Then I should know how well I go that day. I pray so much that my body responds well and doesn't do any of that stuff that the doctor describes! That all sounds frightening. Then on the 21st...which is a Monday I will hopefully go in during the morning and have the transfusion about an hour or so before the surgery and have the surgery. I will be recovering in hospital for at least a week....depending on how well I go...may be another one. However, I may recover really well!
So I hope it all goes to plan!
This is the excitment in our lives so far. I will keep you all updated and try and update you all during the surgery (well not literally while I am asleep).
Ok, thanks for checking in and all your support!
On a social chat ...yesterday Alan, isaac and I went to the beach. We were there from about 1pm to 5.30pm. It was hot yet so nice at the beach. We took 2 umbrellas and our deck chairs to sit on and covered ourselves with so much sunscreen. The water was BEAUTIFUL!!!! I didn't want to get out. Isaac has really grown up and enjoyed the water. It was a calm day. We were on the perfect beach with had the surf life savers right near us and we swam within the flags....it wasn't the main beach so not many people were there. It was perfect!
Well better be off!
Love Charisse
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