Saturday, December 23, 2006 2:17 AM CST
My dad is doing much better now thank you.
It is good to be able to be a family again and not worry about people being so sick in the family.
Most of you would know about my sleeping problem. I appreciated all the advice, support and love when I had that really bad bout of sleeping. My sleeping problem is anxiety and stress related and I am on some medication to help that. This issue is a long term thing because it is all related to the stress and anxiety that I deal with in relation to FA. Some weeks it is really, really bad and other weeks it is much better. Unfortunately last weekend it was very bad and I was very stressed and sleep deprived. The doctor says that when I really get anxious the medication becomes over-ridden and so it will not work...unless you have a GA or something like that. That is why I was so distressed...I also had a huge panic attack along with it. Alan told me that it was a very traumatic night. It is amazing because I remember it and then there are some things I don't remember.
However, I have slept better this week and the new medication that the doctor has tried me on is working. I just need to be able to keep doing my cognitive behavioural therapy, my walking and so on along with it!
I want to say again, thank you to all on the FA group who have offered me support and helped me out....it is much appreciated. It really helps my anxiety to just know that there are others out there like me...so thank you. Thank you also to Prayer Bears who are very faithful in supporting me and praying for me. Thank you to my family who faithfully pray for me and go out their way to help me rest. Thank you mostly to my husband, Alan. He is always there with me. When I am the most anxious he helps me deal with it and most times this is not easy. So thank you Alan.
Ok, tomorrow is Christmas Eve here in Australia. Today Alan, Isaac and I went to Alan's dad's for lunch. It was a good day. It was our Christmas gathering with his dad and partner. Oh what wonderful gifts for us all. We enjoyed exchanging gifts and having a scrumptous meal...Isaac LOVED the upside down pineaple cake. It was really nice. We were there from 1230 to 3pm and then we went to Isaac's great nanna Howard-Jones to give her Christmas gift. Isaac's gift from her is with us and we will put it under the tree on Christmas Eve with the rest.
Tomorrow we have church...Christmas Eve service...in the morning....my sister and I are singing an item and Alan and the children's church have some little production thing happening. Then Sunday night at home...put the presents under the Christmas tree and a busy day on Christmas day! We will have the morning to ourselves....just to be a family...and lunch with my parents and family and dinner with Alan's family! (mum's side). Isaac will be exhausted by the end of it all.
I thouroughly enjoyed spending the day with my sister on Friday just gone. It was also nice to have Alan's mum over as well for lunch and a bit of the afternoon. Liesl and I practiced our item for church, Eliana fed, Denise came, we had lunch and then picked Isaac up from child care and then he went to sleep, Denise went shopping, Elian went shopping with her daddy for Liesl and Liesl and I lounged in the lounge and watched the new "Superman"...heehe.......a good day! I hope all that made sense.
Well now I am going to go.....we have to have dinner, Isaac needs a bath and after such a busy day...we need to relax and I need to sleep well tonight!
Please keep Rachel and Tyler and Benjamin....Nina's family in your prayers. Nina passsed away this week and my heart goes out to them. It is a hard time for this to happen...it is hard whenever it happens...but please keep them in prayer. Nina had FA and was the sweetest little girl. I had the pleasure to meet her at FA camp last year and go to the zoo with them and spend some time at their house.
Ok, love you all and I really pray that you have a very good Christmas...the best that you can have in whatever your situation is. Jesus is faithful. I have found Him to be most comforting in the worst situations.
Merry Christmas,
Love Charisse
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Wednesday, December 6, 2006 6:03 AM CST
Hello All,
what a rough couple of weeks our family has had. It feels like it will never end. I mean, it has been a couple of months really. In the bout of Alan having Chicken pox and Isaac....I started having insomnia problems which always affects my mouth and health. I had 3 weeks of constant problems every night and ended up with bad mouth ulcers throughout my whole mouth. The pain has been unbearable. Obviously I am bearing it but with a lot of difficulty. Pain, when going for too long...like this makes me depressed. I am very prone to depression with all the issues of FA. On Monday I didn't think I could put up with anything anymore. I rang Alan at work and felt so cross and had tears...it was a moment of panic. The ulcers have been so bad that no pain relief has been helping and I think this is the problem. I had morphine tablets and it still did not touch the pain...but it made me have a hang over which made me depressed and then I am stuck in this cycle! I have Isaac to care for and it is not a good cycle....in fact it is an unhealthy cycle. So I stopped those tablets and are just taking digesic which is still very strong and has side effects...but still the pain is hardly touched. I am on numerous stuff for these ulcers now...antibiotics and antifungal.....antseptic mouth washers and anaesthetic mouth wash....it just has to heal and for FA it is twice the healing time of a normal persone. Mouth ulcers has always been a problem when I am stressed and run down!
Please pray that they clear up soon. I feel like my cheeks are swollen and I can't talk properly and I feel miserable.
My dad has been very sick! They are not sure what he has had but suggested some liver virus. He has been told he is not allowed near me..nor is my mum in case she is habouring the virus. He gets more test results back soon. It always feels a bit scary and you worry...I love my dad and don't want anything to ever happen to him. He is the Senior Pastor of our church....a big African church with about 400 people in it. He is an amazing person and it is so hard to see him sick. So please pray that he will get well soon. He has been very sick. It looks like he may be getting better but it has been rough going. It is also hard to not have mum around too. I love my mum and have missed her heaps as well. I miss both mum and dad.
Liesl, my sister, is going well with her baby, Eliana. Tim is also good (husband). They came here yesterday because I was feeling so down...just to give me some support. Isaac wanted to help with the baby and watch her have a bath and watch Liesl feed and help Tim with everything. He loves his Uncle Tim and seems to be competeing for attention. He had a fun time in the bath.....Uncle Tim and him (Tim was not in the bath) were squirting water at each other and Isaac was squealing with delight! We had tea together and I got to be an Aunty. I love Eliana. She is sweet and she likes to look at me. I love to cuddle her and help dress her and help Liesl with different things. When Tim goes back to work next week we will probably see more of each other....especially since mum is not allowed near them either. Oh yes, dad is not allowed near the baby and Liesl either. We are all a very tight nitted family and so it is hard when we all have to be separated......due to sickness. We are very close. We are praying that dad is feeling better by Christmas. It has been very unfortunate for us all....especially dad...he has been very sick...we love you dad.
Well, I am going to put new pictures of the baby and Isaac and us all in the photo section.
Please keep praying for our family. Every Thursday night our family and church folk meet for a prayer meeting and target FA and the well being of our family. As I said in my last journal....our roots in Christ go deep down and as long as that happens...we don't need to worry. However, Jesus asks us to pray and keep praying for the sick and for miracles...that is what we do as a family. So please join us in prayer.....prayer for my dad, prayer that I will be healed from FA. Prayer that Isaac and Alan will be well and protected and grow in God. Prayer that Liesl and Tim will love being parents and grow in God and be blessed and that Eliana will be blessed by God too. In this life, it is a battle....a Spiritual battle I believe. Therefore, we cannot stop praying...our passion is prayer.
Hope you didn't mind me sharing that with you guys.
Love you heaps and don't forget to check out the photos....in the process of being put up there so see if they are there yet!
Love Charisse
Sunday, December 31, 2006
Thursday, November 30, 2006
November 2006 entries
Tuesday, November 21, 2006 11:49 PM CST
Hello!
What a busy time we have had since Liesl's baby has been born. She came home today...so they will start a new life and routine at home now. The baby is doing well.
As for me...I am doing ok. I always get very emotional when babies are born! I am ready for a second baby myself and it feels frustrating that circumstances with FA can get in the way of your dreams. Sometimes it doesn't stop your dream but just delays it...others struggle to see their dreams fulfilled! Hope! Never give up hope to follow your dreams. If parents are reading this..never give up hope on your child to accomplish what they want to in life. If an FA teenager is reading this.....it can be an emotional journey with FA but never give up hope on building your life, marrying, getting a job, being with family, having a baby. If you are an FA adult! Well....go for your dreams that you have not fulfilled yet! I cannot ever let my dreams be taken away. I feel easily sad and depressed and I feel devastated when I can't see my dream and when I feel there is no hope.
I was reading my Bible and doing my devotions by myself while Isaac was asleep today. in fact Isaac is still asleep but I really felt like I wanted to share with you the inspiration that I have felt from my time with God today.
Firstly, I have been reading a lot about trees in the Bible. Hehe...sounds funny but it really is very inspirational.
Jeremiah 17: verses 7 to 8..."Blessed is the man who trusts in the Lord, whose confidence is in Him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when the heat comes, its leaves are always green. It has no worries in a year of drought and never fails to bear fruit".
I really like this passage and I will not share the intimate things that I wrote in my journal concerning everything about my life. One thing I do want to share is that I am a born-again Christian. Jesus is my Saviour and Lord. My faith is a huge and very serious part of my life and part of my walk with FA. I often "see" myself crying or being overwhelmed by FA and by circumstances. Circumstances cause me grief and I cry uncontrollably sometimes. But today The Bible inspired me to take another look at my life. This verse is talking about a child of God...like me...who trusts in the Lord....I mean, think about a tree.. They have deep roots and are drawing on life giving water under the soil. In a drought their roots are SO deep that they still get what they need when everything else is drying up! It doesn't die. There is a lot of strength there and a lot of "fruit". It does not have to fear because its roots are so deeply planted. This passage talks about how children of God...men and women who have Jesus as their Lord and Saviour and compares them to be like a tree. I can picture another side of myself. No matter what happens on this FA journey...I have never ever felt like I want to turn away from God. He, soley, has been my strength. This is serious stuff.....my roots are so deeply planted into my God, that even though I may seem flustered on the outside at times....I have nothing to fear. This is a calming thought for me.
I would not usually share about all of this so much on this online journal. But today, it felt right to share.
Anyway, enough about that.....hehe...unfortunately I had a fall on Sunday. My deck chair gave way..the material broke and I fell with Isaac on my lap into the metal frame of the chair, hurting my back quite badly...and my arms and neck. I have a big black bruise on my back. I was protecting Isaac on the fall down so I fell weird and feel very sore.
Otherwise, back to normal living!
Love you all and have a good week.
Love Charisse
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Friday, November 17, 2006 6:48 AM CST
Hello!!!!
Exciting news! My sister had her baby today at 4.30pm on the 17th November. It was a long labour but she is doing well. Baby was a bit shocked after the labour and needed oxygen and is resting in the nursery. Liesl has breastfed and she looked like she latched on great. I bought has some clothes for the baby tonight. OH...she had a baby girl. Her name is Eliana Liesl Christie. She weighed 8 poun 4 oz. She was 51 cms long. She is gorgeous with her dark, black hair and a lot of it too! We didn't get to hold her tonight.....she was resting. Liesl looked a bit tired and so did Tim...but it is all very exciting.
More good news....Alan has the clearance from the doctor that he no longer is contagious with the chicken pox. It is over and gone and he is feeling much better...what a relief.
Since I heard that my sister was in labour I literally wept all day. I have not been able to contain my emotions. When I saw her I burst out crying and couldn't talk properly....not just tears...but real cover your face and cry....I wept on the way home and I cried full on cry when I got home. The tears come out of my eyes without control. That is a woman for you...and also all my feelings about having another baby coming out....joy and grief over FA and desires. I cannot wait until my sister is at home. Isaac has not seen her yet. I took a video and showed him it and he is excited that "baby is out of Liesl's tummy now?".....we will probably take him in tomorrow to see her and the baby.
Welcome to Tyler Junior,.....Teresa and Tyler and Emma have a new baby in their house. Congratulations to them as well. The Cliftons! It is wonderful. I cried full on when I heard that Tyler had come into this world.
Well I need to calm down and have some sleep. I had infusion today and am feeling very shaky.
Love you all,
Charisse
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Saturday, November 11, 2006 11:14 PM CST
***NEW PICTURES - of Isaac's birthday and of the Christmas Pageant***
I am actually feeling really down today. I am not feeling my usual self at all. This down feeling is so overwhelming.
Alan still has chicken pox. He is still getting new spots. He can't go near anyone. We both feel very down about that. I hope it is over soon. Alan is feeling better as in he is not feeling unwell anymore...but he is very itchy and has lots of spots!
Isaac is doing well. He is asleep right now. He is enjoying playing with all his new gifts from his birthday. We rescheduled his birthday party to the 25th November. We will have a cake and celebrate his birthday with his little friends after all this chicken pox is over.
Liesl's due date is today with her baby. Although we know babies don't always come on their due date. She is really ready for that baby to come out now. We are just waiting.
Anyway, I better go. Please leave a message to say hello. It really brightens my day when I read them and today I am especially low.
Bless you all and update soon.
Love Charisse
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Tuesday, November 7, 2006 4:48 AM CST
***UPDATE***
Wednesday 8th November
Alan has chicken pox! He broke out in spots today. On his scalp, his chest, back, arms.....so this is why he has been feeling so yucky. Actually, because Isaac had chicken pox we had been watching out for this. Alan had never had chicken pox....well now he has it...and on Isaac's 4th birthday. Despite Alan feeling so off and not being able to go near anyone...Isaac had a good birthday. He opened his presents with us this morning and was very excited over his Thomas accessories...and totetum tennis....we had to cancel his friends coming over because of Alan's chicken pox...but Isaac and I still went to kindergym. His friends gave him his presents there and He wore a badge that said he was "4 Today". He was very excited. We came home and had lunch with daddy and put candles on the cake and sang "Happy Birthday"....and then Isaac and I went to my sister's house to let daddy have a rest because he was feeling wiped out again. Isaac had a sleep at my sister's house and Liesl and I watched, "Sense and Sensibility"...one of those girl movies (hey Alan likes it too!). That was nice. Then Uncle Tim came home from work and Isaac woke up and they gave him his birthday present...which Isaac loved....we then came home. Isaac is now in bed and Alan and I are relaxing. Please pray that Alan does not suffer with chicken pox for long. I am safe from the chicken pox. I have already had it and when Isaac broke out I had the zooster immunoglobulin injection to protect me and the doctor says that I am still protected from this outbreak of Alans...so that is good.
Happy Birthday to Jacy Box! Happy Birthday for the 8th of November as well!
Ok, I am off to relax!
Love Charisse
***
Hello All,
I have not had much time to update. I had my gynae surveillance and so far so good. I should get some other results back in a couple of weeks.
Isaac is over the chicken poxs completely. Both Alan and I have felt really tired lately...my neutriphils dropped a bit and I have had some ulcers....could be any virus I have come in contact with that has done that...like chicken pox....but I have not caught anything and I may not necessarily catch anything....body could be just working to keep me well..and will go back up again.
Alan is not feeling too well though. He has felt like he has had the flu. But not the flu. He came home from work early today. It is unusual for Alan to feel this way. So I went out and bought him a "get well" present. Hopefully it won't be anything too much.
Isaac's birthday is tomorrow! He turns 4 years old! We have kindergym tomorrow. We will give him his presents in the morning, go to kindergym, and then come home and one of his friends from kindergym is coming over with his mum for lunch. And my sister may be coming too. Then on Saturday we have a group of kids from church coming over and Isaac will have a cake and stuff. It will be fun.
We don't have Thanksgiving here in Australia...so our BIG Christmas Pageant was on the 4th November. Isaac loved it! I have new pictures to put up.
My sister is 39 weeks pregnant now....and a few days...any day the baby should come...it is exciting!
Well, got to go!
Love Charisse
Hello!
What a busy time we have had since Liesl's baby has been born. She came home today...so they will start a new life and routine at home now. The baby is doing well.
As for me...I am doing ok. I always get very emotional when babies are born! I am ready for a second baby myself and it feels frustrating that circumstances with FA can get in the way of your dreams. Sometimes it doesn't stop your dream but just delays it...others struggle to see their dreams fulfilled! Hope! Never give up hope to follow your dreams. If parents are reading this..never give up hope on your child to accomplish what they want to in life. If an FA teenager is reading this.....it can be an emotional journey with FA but never give up hope on building your life, marrying, getting a job, being with family, having a baby. If you are an FA adult! Well....go for your dreams that you have not fulfilled yet! I cannot ever let my dreams be taken away. I feel easily sad and depressed and I feel devastated when I can't see my dream and when I feel there is no hope.
I was reading my Bible and doing my devotions by myself while Isaac was asleep today. in fact Isaac is still asleep but I really felt like I wanted to share with you the inspiration that I have felt from my time with God today.
Firstly, I have been reading a lot about trees in the Bible. Hehe...sounds funny but it really is very inspirational.
Jeremiah 17: verses 7 to 8..."Blessed is the man who trusts in the Lord, whose confidence is in Him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when the heat comes, its leaves are always green. It has no worries in a year of drought and never fails to bear fruit".
I really like this passage and I will not share the intimate things that I wrote in my journal concerning everything about my life. One thing I do want to share is that I am a born-again Christian. Jesus is my Saviour and Lord. My faith is a huge and very serious part of my life and part of my walk with FA. I often "see" myself crying or being overwhelmed by FA and by circumstances. Circumstances cause me grief and I cry uncontrollably sometimes. But today The Bible inspired me to take another look at my life. This verse is talking about a child of God...like me...who trusts in the Lord....I mean, think about a tree.. They have deep roots and are drawing on life giving water under the soil. In a drought their roots are SO deep that they still get what they need when everything else is drying up! It doesn't die. There is a lot of strength there and a lot of "fruit". It does not have to fear because its roots are so deeply planted. This passage talks about how children of God...men and women who have Jesus as their Lord and Saviour and compares them to be like a tree. I can picture another side of myself. No matter what happens on this FA journey...I have never ever felt like I want to turn away from God. He, soley, has been my strength. This is serious stuff.....my roots are so deeply planted into my God, that even though I may seem flustered on the outside at times....I have nothing to fear. This is a calming thought for me.
I would not usually share about all of this so much on this online journal. But today, it felt right to share.
Anyway, enough about that.....hehe...unfortunately I had a fall on Sunday. My deck chair gave way..the material broke and I fell with Isaac on my lap into the metal frame of the chair, hurting my back quite badly...and my arms and neck. I have a big black bruise on my back. I was protecting Isaac on the fall down so I fell weird and feel very sore.
Otherwise, back to normal living!
Love you all and have a good week.
Love Charisse
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Friday, November 17, 2006 6:48 AM CST
Hello!!!!
Exciting news! My sister had her baby today at 4.30pm on the 17th November. It was a long labour but she is doing well. Baby was a bit shocked after the labour and needed oxygen and is resting in the nursery. Liesl has breastfed and she looked like she latched on great. I bought has some clothes for the baby tonight. OH...she had a baby girl. Her name is Eliana Liesl Christie. She weighed 8 poun 4 oz. She was 51 cms long. She is gorgeous with her dark, black hair and a lot of it too! We didn't get to hold her tonight.....she was resting. Liesl looked a bit tired and so did Tim...but it is all very exciting.
More good news....Alan has the clearance from the doctor that he no longer is contagious with the chicken pox. It is over and gone and he is feeling much better...what a relief.
Since I heard that my sister was in labour I literally wept all day. I have not been able to contain my emotions. When I saw her I burst out crying and couldn't talk properly....not just tears...but real cover your face and cry....I wept on the way home and I cried full on cry when I got home. The tears come out of my eyes without control. That is a woman for you...and also all my feelings about having another baby coming out....joy and grief over FA and desires. I cannot wait until my sister is at home. Isaac has not seen her yet. I took a video and showed him it and he is excited that "baby is out of Liesl's tummy now?".....we will probably take him in tomorrow to see her and the baby.
Welcome to Tyler Junior,.....Teresa and Tyler and Emma have a new baby in their house. Congratulations to them as well. The Cliftons! It is wonderful. I cried full on when I heard that Tyler had come into this world.
Well I need to calm down and have some sleep. I had infusion today and am feeling very shaky.
Love you all,
Charisse
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Saturday, November 11, 2006 11:14 PM CST
***NEW PICTURES - of Isaac's birthday and of the Christmas Pageant***
I am actually feeling really down today. I am not feeling my usual self at all. This down feeling is so overwhelming.
Alan still has chicken pox. He is still getting new spots. He can't go near anyone. We both feel very down about that. I hope it is over soon. Alan is feeling better as in he is not feeling unwell anymore...but he is very itchy and has lots of spots!
Isaac is doing well. He is asleep right now. He is enjoying playing with all his new gifts from his birthday. We rescheduled his birthday party to the 25th November. We will have a cake and celebrate his birthday with his little friends after all this chicken pox is over.
Liesl's due date is today with her baby. Although we know babies don't always come on their due date. She is really ready for that baby to come out now. We are just waiting.
Anyway, I better go. Please leave a message to say hello. It really brightens my day when I read them and today I am especially low.
Bless you all and update soon.
Love Charisse
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Tuesday, November 7, 2006 4:48 AM CST
***UPDATE***
Wednesday 8th November
Alan has chicken pox! He broke out in spots today. On his scalp, his chest, back, arms.....so this is why he has been feeling so yucky. Actually, because Isaac had chicken pox we had been watching out for this. Alan had never had chicken pox....well now he has it...and on Isaac's 4th birthday. Despite Alan feeling so off and not being able to go near anyone...Isaac had a good birthday. He opened his presents with us this morning and was very excited over his Thomas accessories...and totetum tennis....we had to cancel his friends coming over because of Alan's chicken pox...but Isaac and I still went to kindergym. His friends gave him his presents there and He wore a badge that said he was "4 Today". He was very excited. We came home and had lunch with daddy and put candles on the cake and sang "Happy Birthday"....and then Isaac and I went to my sister's house to let daddy have a rest because he was feeling wiped out again. Isaac had a sleep at my sister's house and Liesl and I watched, "Sense and Sensibility"...one of those girl movies (hey Alan likes it too!). That was nice. Then Uncle Tim came home from work and Isaac woke up and they gave him his birthday present...which Isaac loved....we then came home. Isaac is now in bed and Alan and I are relaxing. Please pray that Alan does not suffer with chicken pox for long. I am safe from the chicken pox. I have already had it and when Isaac broke out I had the zooster immunoglobulin injection to protect me and the doctor says that I am still protected from this outbreak of Alans...so that is good.
Happy Birthday to Jacy Box! Happy Birthday for the 8th of November as well!
Ok, I am off to relax!
Love Charisse
***
Hello All,
I have not had much time to update. I had my gynae surveillance and so far so good. I should get some other results back in a couple of weeks.
Isaac is over the chicken poxs completely. Both Alan and I have felt really tired lately...my neutriphils dropped a bit and I have had some ulcers....could be any virus I have come in contact with that has done that...like chicken pox....but I have not caught anything and I may not necessarily catch anything....body could be just working to keep me well..and will go back up again.
Alan is not feeling too well though. He has felt like he has had the flu. But not the flu. He came home from work early today. It is unusual for Alan to feel this way. So I went out and bought him a "get well" present. Hopefully it won't be anything too much.
Isaac's birthday is tomorrow! He turns 4 years old! We have kindergym tomorrow. We will give him his presents in the morning, go to kindergym, and then come home and one of his friends from kindergym is coming over with his mum for lunch. And my sister may be coming too. Then on Saturday we have a group of kids from church coming over and Isaac will have a cake and stuff. It will be fun.
We don't have Thanksgiving here in Australia...so our BIG Christmas Pageant was on the 4th November. Isaac loved it! I have new pictures to put up.
My sister is 39 weeks pregnant now....and a few days...any day the baby should come...it is exciting!
Well, got to go!
Love Charisse
Tuesday, October 31, 2006
October 2006 entries
Sunday, October 22, 2006 0:39 AM CDT
Thursday 26th October
**UPDATE**
Well, Isaac has chicken pox. He is at the tail end of it now. He broke out in spots on Monday and his last new spot was last night. He has only had 5 spots. Isaac was immunised as a baby, however, they can still get it even if they are immunised. It just is a lot milder. So Isaac has not felt sick or had any fevers. He has complained a bit of being itchy. But he has been alright. Our main concern is Alan...he has never had chicken pox. We have a script to go and get him vaccinated. As for myself. I had chicken pox when I was 17 years old and it was not nice. Even though I have had it...and have some immunity to it...because FA and chicken pox do not mix and can cause bone marrow complications I have to go for a globulin injection in my buttock tomorrow morning..priority one. This will protect me for a few weeks against getting the virus and severity. So my haematologist has arranged for me to have it in the morning tomorrow some time. I don't like injections in the but. I used to have to have this injections all the time whenever I came in contact with people who had chicken pox...or an out break at school. I remember staring my haematologist down when I went into emergency to receive the injection. They had to give me two syringes.....in both buttocks at the same time and I would cry and scream. I am not looking forward to this injection...but I am sure I will handle it better than when I was a child.
So that is my latest news. I hope all of you are going well.
Love Charisse
***
Hello All,
I am very behind in my updating! Sorry about all that. It has actually been a tough month for me...more than you can imagine. There are so many things going on in the background here...in my life...that I would not know where to start.
Sleep insomnia has been a problem for me. This has actually been a chronic problem on and off for me for a couple of years, however, specifically this past year....since I initially got the first marrow results back that showed the slight increase in blast count at the beginning of the year. Even though I may not share heaps about all that is going on, this issue is always on my mind and sometimes I become so overwhelmed by the whole issue.
The research into whether a transplant is the way I want to go is a constant thing. I know, I know....I am not able to make this decision quickly at all. There is a LOT involved in my situation.
So where am I with that? First things first...I have to have a liver biopsy to check that my liver could even handle a transplant. The oxymethalone I used to be on has caused high liver enzymes. I am not on it anymore. In fact I have been off it for over 4 years now. However, my enzymes remain significantly high. It doesn't affect my general health and before Isaac was born I had a liver biopsy which didn't show there was any signficant damage...just decreased amount of bile ducts in the liver. However, this needs to be checked by the transplant team again to see if I could even go ahead with a transplant. Sometime soon this will happen. I know it may seem like things are taking a long time to deal with here....but let me reassure you that it is not because the doctors are delaying, but because we have needed to go at my pace. And I need to go slow at the moment...even when I feel things are urgent, I feel like I can only go at my pace. Otherwise, life starts to fall apart for me. I feel like I am going crazy. I will take as long as it needs me to feel right about anything.
Sleep is a problem. As I mentioned. I have been sleeping do badly that my judgement is impaired during the day. We are trying to get me into a sleep specialist right now.
What else is going on......my gynae surveillance is coming up in 2 weeks under anaesthetic....hysterscope and so on.
I know I have some more specialist appointments.
My sister is now 37 weeks pregnant and we can't wait for her to have the baby.
Isaac has been doing well. He started pre-entry preschool on Friday just gone. We had some tears and when he got home that day he told me that he had missed mummy and cried at the gate. Poor love. It is so hard to not cry as a mum when dropping them off for the first time. I gave him to the teacher who hugged him as I left. I had to get to my IVIG infusion. I have been a bit shaky this time around after the infusion but it went well.
Well, I am tired. Infusion tired....so it has been a big day at church and I am going to go and lie down. I am sure that there is so much more to update on....but some things slip my mind...let me think........
Oh yes, Isaac turns 4 years old in 2 weeks! Also we have the Christmas Pagaent coming up. Isaac can't wait. This is the first year that he has asked about Santa Clause.
Ah yes....I will leave it for now.
Love Charisse
Thursday 26th October
**UPDATE**
Well, Isaac has chicken pox. He is at the tail end of it now. He broke out in spots on Monday and his last new spot was last night. He has only had 5 spots. Isaac was immunised as a baby, however, they can still get it even if they are immunised. It just is a lot milder. So Isaac has not felt sick or had any fevers. He has complained a bit of being itchy. But he has been alright. Our main concern is Alan...he has never had chicken pox. We have a script to go and get him vaccinated. As for myself. I had chicken pox when I was 17 years old and it was not nice. Even though I have had it...and have some immunity to it...because FA and chicken pox do not mix and can cause bone marrow complications I have to go for a globulin injection in my buttock tomorrow morning..priority one. This will protect me for a few weeks against getting the virus and severity. So my haematologist has arranged for me to have it in the morning tomorrow some time. I don't like injections in the but. I used to have to have this injections all the time whenever I came in contact with people who had chicken pox...or an out break at school. I remember staring my haematologist down when I went into emergency to receive the injection. They had to give me two syringes.....in both buttocks at the same time and I would cry and scream. I am not looking forward to this injection...but I am sure I will handle it better than when I was a child.
So that is my latest news. I hope all of you are going well.
Love Charisse
***
Hello All,
I am very behind in my updating! Sorry about all that. It has actually been a tough month for me...more than you can imagine. There are so many things going on in the background here...in my life...that I would not know where to start.
Sleep insomnia has been a problem for me. This has actually been a chronic problem on and off for me for a couple of years, however, specifically this past year....since I initially got the first marrow results back that showed the slight increase in blast count at the beginning of the year. Even though I may not share heaps about all that is going on, this issue is always on my mind and sometimes I become so overwhelmed by the whole issue.
The research into whether a transplant is the way I want to go is a constant thing. I know, I know....I am not able to make this decision quickly at all. There is a LOT involved in my situation.
So where am I with that? First things first...I have to have a liver biopsy to check that my liver could even handle a transplant. The oxymethalone I used to be on has caused high liver enzymes. I am not on it anymore. In fact I have been off it for over 4 years now. However, my enzymes remain significantly high. It doesn't affect my general health and before Isaac was born I had a liver biopsy which didn't show there was any signficant damage...just decreased amount of bile ducts in the liver. However, this needs to be checked by the transplant team again to see if I could even go ahead with a transplant. Sometime soon this will happen. I know it may seem like things are taking a long time to deal with here....but let me reassure you that it is not because the doctors are delaying, but because we have needed to go at my pace. And I need to go slow at the moment...even when I feel things are urgent, I feel like I can only go at my pace. Otherwise, life starts to fall apart for me. I feel like I am going crazy. I will take as long as it needs me to feel right about anything.
Sleep is a problem. As I mentioned. I have been sleeping do badly that my judgement is impaired during the day. We are trying to get me into a sleep specialist right now.
What else is going on......my gynae surveillance is coming up in 2 weeks under anaesthetic....hysterscope and so on.
I know I have some more specialist appointments.
My sister is now 37 weeks pregnant and we can't wait for her to have the baby.
Isaac has been doing well. He started pre-entry preschool on Friday just gone. We had some tears and when he got home that day he told me that he had missed mummy and cried at the gate. Poor love. It is so hard to not cry as a mum when dropping them off for the first time. I gave him to the teacher who hugged him as I left. I had to get to my IVIG infusion. I have been a bit shaky this time around after the infusion but it went well.
Well, I am tired. Infusion tired....so it has been a big day at church and I am going to go and lie down. I am sure that there is so much more to update on....but some things slip my mind...let me think........
Oh yes, Isaac turns 4 years old in 2 weeks! Also we have the Christmas Pagaent coming up. Isaac can't wait. This is the first year that he has asked about Santa Clause.
Ah yes....I will leave it for now.
Love Charisse
Saturday, September 30, 2006
September 2006 entries
Saturday, September 23, 2006 2:50 AM CDT
26th September 2006 Tuesday.
***UPDATE***
Isaac had his doctor's appoitnment on Monday and he is doing a lot better. He is improving! Praise the Lord! The antibiotics for his chest seem to have cleared up that problem wonderfully! His diarrhoea...well he still has it but it has decreased its amount to only 2 times a day and the awful smell has gone...which tells us this bug is being treated appropriately with the antibiotics he is still on. His bottom is not so red and he will let me clean it and put on cream without screaming. We don't have to go to hospital! YES! Isaac's eating has improved over the last 2 days and his energy has picked up...he was like a whirl wind today. The doctor has cleared him to go back to kindergym and child care on Friday which is good. He was starting to get bored! Now that he feels better...he has some energy to burn. This is all such a relief. Now we can all get more rest as well! Isaac is still a bit vulnerable but improving. The doctor has said that if the diarrhoea gets worse again...we will go back and he sees his paediatrician again real soon as well. He is still on lactose free diet and no dairy for a while....but hey...we can handle that at long as he feels better and is not so upset. 48 hours or more of antibiotics really makes a difference. I am praying that he continues to stay well now!
Love Charisse
************
Hello All,
what a challenging week! Isaac is still sick with diarrhoea...Day 18! The doctor has become a bit concerned. Not only has Isaac had this bug for ages but he also has managed to have a chest infection for a week...which he is now on antibiotics for. They also suspect a different bug for the bowels...except to test properly for it, the child needs to be in hospital. Because Isaacs has gone for so long...we are treating for it anyway...so he is on a second lot of antibiotics for his gut. The doctor said that if he doesn't show much improvement with his chest of bowel by Monday he may need a visit to the hospital...or at least think about where we go with treatment next! Isaac has been really sick and very uphappy!
On a good note...my tongue is almost completely healed up. The ENT appointment went really well on Wednesday and today it is almost all gone...my tongue feels a lot more normal and only stings every now and then.
We watched Steve Irwin's memorial on TV this week. Very emotional and very Australian.
I had my IVIG infusion yesterday and it went well. Although at one point the nurse decided to let it free flow and it made me feel sick and get a headache and a sore wrist! We told them to put it back in the machine to regulate the rate...I just can't handle it going that fast!
My infusion reaction has gotten heaps better since my doctor (old one) put me on prophalactic steroids the day before the infusion! I am only experiencing tiredness, a little pain and altered perception as opposed to all that pain I used to have.
I see my new doctor for the first time on the 6th October.
Today we had lunch with Alan's family...Isaac saw his great grandma...that was really nice.
Tomorrow is a wedding...an African wedding and it will be interesting.
Monday, Isaac goes back to the doctor.
My sister, Liesl, is now 33 weeks pregnant tomorrow! It is getting closer....it is very exciting. I can't wait to meet my new nephew or niece....and Isaac can't wait to meet his counsin!
Well, I am going to go. I think Isaac just got up from his sleep.
Love Charisse
--------------------------------------------------------------------------------
Friday, September 15, 2006 1:30 AM CDT
Hello All,
well the burn on my face only took a couple of days to go away. So that is good. However, my tongue became really painful. At the end of the week the stitches fell out on my tongue and I was in quite a lot of pain. I was having trouble eating and talking did become a problem. Then it started bleeding a bit more...so Alan and I took a picture of it and sent if via email to my ENT to ask if we needed to be worried about it and he called only a short time later and asked me to come in the next morning at 9am. I thought he may put in more stitches...but he decided that we would wait and see how it would heal a bit because it was SO raw....and SO sore...and it the last 2 days the pain has decreased quite dramatically....but it still seems really open. The ENT said that the tongue can act similar to where your tonsils are and when you get them out...it is raw and seems to take forever to heal and then..it suddenly heals up. Anyway, I have another appointment with the ENT this Wednesday to check if anything else needs to be done. FA healing time is increased of course...so I will make sure this tongue heals properly. The pathology on the spot they took out came back normal and clear...Praise the Lord!
Poor Isaac has been so unwell. We are on Day 9 of diarrhoea....he has the rotavirus...a nasty gastro bug that goes around young children and babies. And it tends to make them lactose intolerant for a short while even after the bug. So Isaac is currently on lactose free formula and soy milk. We have had to cut out dairy and that is what he likes mainly..it is hard to explain to an almost 4 year old why he can't eat certain things. His poor little bottom has been so sore...we have had special cream for it. This virus runs for about 2 weeks...so hopefully we are nearing the end. He can't go to kindergym or Kindy or anything like that while he has this and is contagious...so we have been going on family outings...on Wed instead of kindergym we went to the Whispering Wall...a big dam that when you stand either side of it...when you talk you can hear the person clearly on the other end.
Please keep praying for fellow FA sufferers. Sweet Nicholas was coughing up some blood yesterday when I spoke with Donna...pray for him.
Well, I must be off....will update again soon.
Love Charisse
26th September 2006 Tuesday.
***UPDATE***
Isaac had his doctor's appoitnment on Monday and he is doing a lot better. He is improving! Praise the Lord! The antibiotics for his chest seem to have cleared up that problem wonderfully! His diarrhoea...well he still has it but it has decreased its amount to only 2 times a day and the awful smell has gone...which tells us this bug is being treated appropriately with the antibiotics he is still on. His bottom is not so red and he will let me clean it and put on cream without screaming. We don't have to go to hospital! YES! Isaac's eating has improved over the last 2 days and his energy has picked up...he was like a whirl wind today. The doctor has cleared him to go back to kindergym and child care on Friday which is good. He was starting to get bored! Now that he feels better...he has some energy to burn. This is all such a relief. Now we can all get more rest as well! Isaac is still a bit vulnerable but improving. The doctor has said that if the diarrhoea gets worse again...we will go back and he sees his paediatrician again real soon as well. He is still on lactose free diet and no dairy for a while....but hey...we can handle that at long as he feels better and is not so upset. 48 hours or more of antibiotics really makes a difference. I am praying that he continues to stay well now!
Love Charisse
************
Hello All,
what a challenging week! Isaac is still sick with diarrhoea...Day 18! The doctor has become a bit concerned. Not only has Isaac had this bug for ages but he also has managed to have a chest infection for a week...which he is now on antibiotics for. They also suspect a different bug for the bowels...except to test properly for it, the child needs to be in hospital. Because Isaacs has gone for so long...we are treating for it anyway...so he is on a second lot of antibiotics for his gut. The doctor said that if he doesn't show much improvement with his chest of bowel by Monday he may need a visit to the hospital...or at least think about where we go with treatment next! Isaac has been really sick and very uphappy!
On a good note...my tongue is almost completely healed up. The ENT appointment went really well on Wednesday and today it is almost all gone...my tongue feels a lot more normal and only stings every now and then.
We watched Steve Irwin's memorial on TV this week. Very emotional and very Australian.
I had my IVIG infusion yesterday and it went well. Although at one point the nurse decided to let it free flow and it made me feel sick and get a headache and a sore wrist! We told them to put it back in the machine to regulate the rate...I just can't handle it going that fast!
My infusion reaction has gotten heaps better since my doctor (old one) put me on prophalactic steroids the day before the infusion! I am only experiencing tiredness, a little pain and altered perception as opposed to all that pain I used to have.
I see my new doctor for the first time on the 6th October.
Today we had lunch with Alan's family...Isaac saw his great grandma...that was really nice.
Tomorrow is a wedding...an African wedding and it will be interesting.
Monday, Isaac goes back to the doctor.
My sister, Liesl, is now 33 weeks pregnant tomorrow! It is getting closer....it is very exciting. I can't wait to meet my new nephew or niece....and Isaac can't wait to meet his counsin!
Well, I am going to go. I think Isaac just got up from his sleep.
Love Charisse
--------------------------------------------------------------------------------
Friday, September 15, 2006 1:30 AM CDT
Hello All,
well the burn on my face only took a couple of days to go away. So that is good. However, my tongue became really painful. At the end of the week the stitches fell out on my tongue and I was in quite a lot of pain. I was having trouble eating and talking did become a problem. Then it started bleeding a bit more...so Alan and I took a picture of it and sent if via email to my ENT to ask if we needed to be worried about it and he called only a short time later and asked me to come in the next morning at 9am. I thought he may put in more stitches...but he decided that we would wait and see how it would heal a bit because it was SO raw....and SO sore...and it the last 2 days the pain has decreased quite dramatically....but it still seems really open. The ENT said that the tongue can act similar to where your tonsils are and when you get them out...it is raw and seems to take forever to heal and then..it suddenly heals up. Anyway, I have another appointment with the ENT this Wednesday to check if anything else needs to be done. FA healing time is increased of course...so I will make sure this tongue heals properly. The pathology on the spot they took out came back normal and clear...Praise the Lord!
Poor Isaac has been so unwell. We are on Day 9 of diarrhoea....he has the rotavirus...a nasty gastro bug that goes around young children and babies. And it tends to make them lactose intolerant for a short while even after the bug. So Isaac is currently on lactose free formula and soy milk. We have had to cut out dairy and that is what he likes mainly..it is hard to explain to an almost 4 year old why he can't eat certain things. His poor little bottom has been so sore...we have had special cream for it. This virus runs for about 2 weeks...so hopefully we are nearing the end. He can't go to kindergym or Kindy or anything like that while he has this and is contagious...so we have been going on family outings...on Wed instead of kindergym we went to the Whispering Wall...a big dam that when you stand either side of it...when you talk you can hear the person clearly on the other end.
Please keep praying for fellow FA sufferers. Sweet Nicholas was coughing up some blood yesterday when I spoke with Donna...pray for him.
Well, I must be off....will update again soon.
Love Charisse
Wednesday, August 30, 2006
August 2006 entries
Saturday, August 26, 2006 7:02 AM CDT
**Update on 5th September Tuesday**
Had my tongue surgery yesterday! It went well and I am home. I was going to be in overnight...but I didn't bleed much and came out fine. My face is burnt though. My face is red and burning today. I am allergic to tape and I know that I had tape on my face while being intubated...plus I am guessing the powerful lights that they used for me in surgery....burnt me...man...It is sore today...and I will watch that no real damage has been done. You know when people have surgery done their eyes have to be taped down so that the lights don't make you blind. That is true you know. I work as a nurse in this area...so I wouldn't be surprised if the lights had something to do with my face since they were working on my mouth!
My tongue looks good. It is nicely stiched up and not too sore. A little bruised and red...but looks rather cool. Not too swollen and I can talk ok.
I will update more later.
Love Charisse
***
Well, I had my IVIG yesterday and all went well. I had a broken sleep last night and today I slept til 2pm which is not unusual with the effects of the IVIG. Poor Alan was up most of the night...well awake with Isaac who decided to wake at 3.30am and not return back to sleep. Isaac has been pretty full on today and Alan is tired. It is nice that Isaac is back in bed and praying that he will sleep the whole night tonight as tomorrow is church...and we don't want a habit of this.
I have been on antibiotics for a nasty mouth ulcer just by the corner of my mouth on the left. It has been awful. I am very prone to mouth ulcers. This one is big and has pus (yuck) and definitely needed antibiotics. I sure hope it clears up quickly. I have had it for a week and started antibiotics on Tuesday night. I am having oral surgery in 8 days and really need it to be gone...otherwise it will not be pleasant.
Yes, I am having a white spot removed from my tongue on the 4th September. It is too small to biopsy and we have been watching it...although I have felt paranoid and so we decided to get it taken off completely because it is a quick and easy surgery. I will have a light general anaesthetic and they will do a panendoscopy as well...a look around while I am asleep in my sinuses...just surveillance...I have had no problems.
As for my haematologist who went to Canada...I really miss him. Already I miss him and last night I had a tear or two. I get quite emotional as a result of the IVIG. And knowing that he is not around to deal with anything made me feel lonely and a little scared. It is weird that he is gone. We will be trying to build a good relationship with this other guy that I mentioned in the last update. he also worked with my old doctor and they know each other well.
It is Alan's birthday on the 5th September. We are having a party for him on the 2nd of Sept before my surgery. Also, Father's Day on the 3rd. Happy Father's Day Alan!
God has been good to us since Alan went part time. God has been providing what we need. It has been amazing really.
We have a new car on the way subject to finance..it is a Toyota Camery....very nice car....I am so vague and can never remember the model and year....but it is a good year and a nice car. With petrol prices going up, it will be more fuel efficient than our Ford Falcon was. Praise the Lord!
I may be seeing a sleep doctor to help with my sleep patterns. Not getting enough sleep and rest has been affecting me.
Otherwise, life is good. Prayer meeting every Thursday. It is nice to be in the presence of the Lord. Tomorrow at church we have a well known Australian singer there....her name is Aliki. It will be enjoyable.
Well, that is enough for now. Bless you all and have a great weekend!
Love Charisse
--------------------------------------------------------------------------------
Monday, August 14, 2006 8:04 AM CDT
*New Update*
Saturday 19th August 8.28pm
Hi again. I am just putting a small update from the entry below. So many things have happened all at once this week. On Monday my nanny quit and we had been working together for 5 months and a little more...I cried...because I was attached to her. If you didn't realise already...I am the type of person who gets quite attached to things....even my own car. My car is a 1989 model...nothing too fancy...but I love it..the thought of getting a new car makes me cry. Yeah, I can be a bit emotional. You really have to laugh sometimes. Ayway, so on Thursday we had a new nanny who, if we are happy after trialing her for a few weeks, we can keep for a couple of months. She is sweet. She is young compared to my "old" nanny. And it felt strange waking up and seeing her in the morning instead of the other nanny. You have to get used to the new nanny's way of doing things and she has to get used to me...but I think it will work out. My old nanny rang and asked whether we could keep in touch..so that was nice.
Ah yes, my doctor....I have had tears this week and felt quite scared about a new doctor. On Wednesday I woke with so much emotional pressure in my head, I felt that I should write an email to my haematologist who has resigned to express what I am feeling inside. My Psychologist always tells me that when there is an abrupt "finish" to something that you are left unable to express your grief and feelings. I have done a lot of unexpressing in my lifetime and I was determined to not bottle all this up as well. She adviced me that if writing an email or letter is what I do best...then to do it. She has given me advice when this stuff happens. So I wrote my doctor a letter/email and sincerely expressed the feelings, worries and concerns and thanks that I did not get to say at my appointment because it was all very sudden...and I was speechless! It has felt a lot better to express those feelings. I made sure Alan went over the email to check that it was ok. He said it was extremely well written.
On Friday Alan met with the transplantor here in Adelaide. Of course, he can be a normal haematologist as well and my doctor had mentioned that his personality was one very much like my current doctor. I had been extremely scared of this new doctor...and it has not helped that I have only dealt with the issue of transplant when seeing him and "talking" to him....I put that in inverted comas because my anxiety stops me from saying a word and I just stare at him the whole appointment! However, we have been searching for the right haematologist/oncologist to cover my care...and Alan talked to him about it on Friday. Apparently he was really open to everything and very understanding to the fact that we did not know about our other doctor leaving til the day...and at the end of our appointment. This guy is actually very nice and has smiled at me and has kept his distance..tried to make me smile in appointments when we have approached him about transplant issues...however, I struggle with that topic and it is unbelievable about how I react......the anxiety completely debilitates me. May be if I see this guy just as a consultant haematologist I would settle in better. And I felt relieved to hear that this guy actually treats about 3 other FA patients....and he is an adult haematogist! These are adults. Don't panic. He gave no details...confidentiality laws...but we were able to tell him (should I say Alan)..we were able to tell him all about FA Australia and may be, after he gives our details to these people, just may be...I will get to meet other FA adults in Australia...in Adelaide. It makes me feel better to know he has experience with FA. Anyway, it is a good sign that I am excited because so far whenever I have seen this doctor I have not been able to speak and have been full of anxiety...and have stayed far away...no examinations. But, that is a norm for me. I don't let a doctor do something until I feel like I can trust them. If I really don't feel comfortable with this guy, I will find someone else...so we will see...I have to get the courage up to go and "talk" with him again about normal consults...not transplant.
Well, the excitement doesn't end there...our car died on Friday night. Alan's Ford that is. And now we have to look for a new car! I want to thank our friends (won't mention their names). Thank you for sincerely helping us out in this issue with the car. It is greatly appreciated.
Well, I meant to just do a quick update...but I always get carried away.
Keep praying for me. Sleep is a problem right now...I am not getting enough. I don't fall asleep well.
Otherwise, update soon.
Love Charisse
*************
Monday 14th August
Hello All,
tonight I feel annoyed and I think I just need to vent a bit....again.
It has taken me so long to build relationships with doctors in the past. I have anxiety issues so much with doctors. From things that have happened in the past....from doctors/haematologists who have not known enough about FA. I have had a history with things happening to me with doctors. A medical error just after my brother's transplant, caused his death only a month after his transplant. There is so much mistrust with doctors/haematologist that has happened in relation to me. Doctors have not respected me and crossed my private bondaries without consent and caused me to feel insecure, afraid and upset. Then, finally, I found a doctor...my haematologist...after Isaac was born and he is alsmost 4 years old. This doctor...I won't say his name....but he has understood my emotional/anxiety and depression. He has taught me more about FA than I ever knew under any other doctor I have been with. He respects my boundaries with my body and has never crossed any lines. He has stood up for me with other doctors and put rules in place to protect me dignity. He has helped me conquere some fears and led me to trust him enough to finally allow him to examine me. I have trusted him fully with my bone marrow tests and my blood tests and anything in regards to transplants. I have become very attached to my haematologist. He said that he was committed to seeing me through the tough times.
Well, I had an appointment with him today. At the end of the appointment he announced that he is leaving and going to work in Canada....and he will not be available from the end of this week! I can't believe it! He always said that doctors need to keep in mind that I have extreme depression and anxiety issues and that my care needs to be especially organised and now this. I understand that life can change just like that....but I deserve to know what will happen to my care now. I don't want to do this alone. He should be lining me up with someone properly so my care can be continued satisfactorly. He has some people in mind...but I have never met them. Do they know FA? I am in the middle of decisions as to whether to transplant or not.....procedures and so on that need a haematologisst/oncologist to oversee. I have such an in depth history with doctors and with fear of doctors....to change doctors and not know who to send blood counts to or manage my IVIG therapy or pre-transplant testing.....all of this and I now am expected to trust.........all of this makes me feel so tired. I am infruriated with my doctor for not giving me notice and for not arranging my care or helping me with doctors. In this medical world...there are certain rules that one needs to go by....as a nurse I become shocked and perplexed and cross when someone cuts things fine and does not respect a patient to the full extent. A doctor may be cannot become too attached to their patient. But a patient who has a long term diseases definitely becomes emotionally attached to their doctor. And this is hard to break. He has been the best. He is a great doctor...compassionate, caring, knowledgable....and pro-active in my issues and understanding with how my anxiety works and protective of how other people treated me. I am devastated.
Besides that my permanent nanny rang today and quit....not for any reason that we have wrong with us....but for her own personality issues....and this also devastated me. There are so many changes and I cope badly with change. I find it a struggle.
I have to admit to you all. I have been severely depressed before this happened and Alan has now decreased his hours at work to support me and help me through this. We were starting to look into transplant more....into reproductive procedures and into many things with this haematologist and I find it difficult to just start with a new doctor who will need to learn about my unbelievable fear and anxiety and not approach me and scare me...this is hard.
Sorry about being so glum. Well I must sign off. I have a lot on my mind. Please, people..pray for me. Life if tough at the moment. Depression is debiltating and I don't know...sometimes it feels too much.
Pray for the new doctor...whoever she or he may be...pray I get through this.
Love you all,
Charisse
**Update on 5th September Tuesday**
Had my tongue surgery yesterday! It went well and I am home. I was going to be in overnight...but I didn't bleed much and came out fine. My face is burnt though. My face is red and burning today. I am allergic to tape and I know that I had tape on my face while being intubated...plus I am guessing the powerful lights that they used for me in surgery....burnt me...man...It is sore today...and I will watch that no real damage has been done. You know when people have surgery done their eyes have to be taped down so that the lights don't make you blind. That is true you know. I work as a nurse in this area...so I wouldn't be surprised if the lights had something to do with my face since they were working on my mouth!
My tongue looks good. It is nicely stiched up and not too sore. A little bruised and red...but looks rather cool. Not too swollen and I can talk ok.
I will update more later.
Love Charisse
***
Well, I had my IVIG yesterday and all went well. I had a broken sleep last night and today I slept til 2pm which is not unusual with the effects of the IVIG. Poor Alan was up most of the night...well awake with Isaac who decided to wake at 3.30am and not return back to sleep. Isaac has been pretty full on today and Alan is tired. It is nice that Isaac is back in bed and praying that he will sleep the whole night tonight as tomorrow is church...and we don't want a habit of this.
I have been on antibiotics for a nasty mouth ulcer just by the corner of my mouth on the left. It has been awful. I am very prone to mouth ulcers. This one is big and has pus (yuck) and definitely needed antibiotics. I sure hope it clears up quickly. I have had it for a week and started antibiotics on Tuesday night. I am having oral surgery in 8 days and really need it to be gone...otherwise it will not be pleasant.
Yes, I am having a white spot removed from my tongue on the 4th September. It is too small to biopsy and we have been watching it...although I have felt paranoid and so we decided to get it taken off completely because it is a quick and easy surgery. I will have a light general anaesthetic and they will do a panendoscopy as well...a look around while I am asleep in my sinuses...just surveillance...I have had no problems.
As for my haematologist who went to Canada...I really miss him. Already I miss him and last night I had a tear or two. I get quite emotional as a result of the IVIG. And knowing that he is not around to deal with anything made me feel lonely and a little scared. It is weird that he is gone. We will be trying to build a good relationship with this other guy that I mentioned in the last update. he also worked with my old doctor and they know each other well.
It is Alan's birthday on the 5th September. We are having a party for him on the 2nd of Sept before my surgery. Also, Father's Day on the 3rd. Happy Father's Day Alan!
God has been good to us since Alan went part time. God has been providing what we need. It has been amazing really.
We have a new car on the way subject to finance..it is a Toyota Camery....very nice car....I am so vague and can never remember the model and year....but it is a good year and a nice car. With petrol prices going up, it will be more fuel efficient than our Ford Falcon was. Praise the Lord!
I may be seeing a sleep doctor to help with my sleep patterns. Not getting enough sleep and rest has been affecting me.
Otherwise, life is good. Prayer meeting every Thursday. It is nice to be in the presence of the Lord. Tomorrow at church we have a well known Australian singer there....her name is Aliki. It will be enjoyable.
Well, that is enough for now. Bless you all and have a great weekend!
Love Charisse
--------------------------------------------------------------------------------
Monday, August 14, 2006 8:04 AM CDT
*New Update*
Saturday 19th August 8.28pm
Hi again. I am just putting a small update from the entry below. So many things have happened all at once this week. On Monday my nanny quit and we had been working together for 5 months and a little more...I cried...because I was attached to her. If you didn't realise already...I am the type of person who gets quite attached to things....even my own car. My car is a 1989 model...nothing too fancy...but I love it..the thought of getting a new car makes me cry. Yeah, I can be a bit emotional. You really have to laugh sometimes. Ayway, so on Thursday we had a new nanny who, if we are happy after trialing her for a few weeks, we can keep for a couple of months. She is sweet. She is young compared to my "old" nanny. And it felt strange waking up and seeing her in the morning instead of the other nanny. You have to get used to the new nanny's way of doing things and she has to get used to me...but I think it will work out. My old nanny rang and asked whether we could keep in touch..so that was nice.
Ah yes, my doctor....I have had tears this week and felt quite scared about a new doctor. On Wednesday I woke with so much emotional pressure in my head, I felt that I should write an email to my haematologist who has resigned to express what I am feeling inside. My Psychologist always tells me that when there is an abrupt "finish" to something that you are left unable to express your grief and feelings. I have done a lot of unexpressing in my lifetime and I was determined to not bottle all this up as well. She adviced me that if writing an email or letter is what I do best...then to do it. She has given me advice when this stuff happens. So I wrote my doctor a letter/email and sincerely expressed the feelings, worries and concerns and thanks that I did not get to say at my appointment because it was all very sudden...and I was speechless! It has felt a lot better to express those feelings. I made sure Alan went over the email to check that it was ok. He said it was extremely well written.
On Friday Alan met with the transplantor here in Adelaide. Of course, he can be a normal haematologist as well and my doctor had mentioned that his personality was one very much like my current doctor. I had been extremely scared of this new doctor...and it has not helped that I have only dealt with the issue of transplant when seeing him and "talking" to him....I put that in inverted comas because my anxiety stops me from saying a word and I just stare at him the whole appointment! However, we have been searching for the right haematologist/oncologist to cover my care...and Alan talked to him about it on Friday. Apparently he was really open to everything and very understanding to the fact that we did not know about our other doctor leaving til the day...and at the end of our appointment. This guy is actually very nice and has smiled at me and has kept his distance..tried to make me smile in appointments when we have approached him about transplant issues...however, I struggle with that topic and it is unbelievable about how I react......the anxiety completely debilitates me. May be if I see this guy just as a consultant haematologist I would settle in better. And I felt relieved to hear that this guy actually treats about 3 other FA patients....and he is an adult haematogist! These are adults. Don't panic. He gave no details...confidentiality laws...but we were able to tell him (should I say Alan)..we were able to tell him all about FA Australia and may be, after he gives our details to these people, just may be...I will get to meet other FA adults in Australia...in Adelaide. It makes me feel better to know he has experience with FA. Anyway, it is a good sign that I am excited because so far whenever I have seen this doctor I have not been able to speak and have been full of anxiety...and have stayed far away...no examinations. But, that is a norm for me. I don't let a doctor do something until I feel like I can trust them. If I really don't feel comfortable with this guy, I will find someone else...so we will see...I have to get the courage up to go and "talk" with him again about normal consults...not transplant.
Well, the excitement doesn't end there...our car died on Friday night. Alan's Ford that is. And now we have to look for a new car! I want to thank our friends (won't mention their names). Thank you for sincerely helping us out in this issue with the car. It is greatly appreciated.
Well, I meant to just do a quick update...but I always get carried away.
Keep praying for me. Sleep is a problem right now...I am not getting enough. I don't fall asleep well.
Otherwise, update soon.
Love Charisse
*************
Monday 14th August
Hello All,
tonight I feel annoyed and I think I just need to vent a bit....again.
It has taken me so long to build relationships with doctors in the past. I have anxiety issues so much with doctors. From things that have happened in the past....from doctors/haematologists who have not known enough about FA. I have had a history with things happening to me with doctors. A medical error just after my brother's transplant, caused his death only a month after his transplant. There is so much mistrust with doctors/haematologist that has happened in relation to me. Doctors have not respected me and crossed my private bondaries without consent and caused me to feel insecure, afraid and upset. Then, finally, I found a doctor...my haematologist...after Isaac was born and he is alsmost 4 years old. This doctor...I won't say his name....but he has understood my emotional/anxiety and depression. He has taught me more about FA than I ever knew under any other doctor I have been with. He respects my boundaries with my body and has never crossed any lines. He has stood up for me with other doctors and put rules in place to protect me dignity. He has helped me conquere some fears and led me to trust him enough to finally allow him to examine me. I have trusted him fully with my bone marrow tests and my blood tests and anything in regards to transplants. I have become very attached to my haematologist. He said that he was committed to seeing me through the tough times.
Well, I had an appointment with him today. At the end of the appointment he announced that he is leaving and going to work in Canada....and he will not be available from the end of this week! I can't believe it! He always said that doctors need to keep in mind that I have extreme depression and anxiety issues and that my care needs to be especially organised and now this. I understand that life can change just like that....but I deserve to know what will happen to my care now. I don't want to do this alone. He should be lining me up with someone properly so my care can be continued satisfactorly. He has some people in mind...but I have never met them. Do they know FA? I am in the middle of decisions as to whether to transplant or not.....procedures and so on that need a haematologisst/oncologist to oversee. I have such an in depth history with doctors and with fear of doctors....to change doctors and not know who to send blood counts to or manage my IVIG therapy or pre-transplant testing.....all of this and I now am expected to trust.........all of this makes me feel so tired. I am infruriated with my doctor for not giving me notice and for not arranging my care or helping me with doctors. In this medical world...there are certain rules that one needs to go by....as a nurse I become shocked and perplexed and cross when someone cuts things fine and does not respect a patient to the full extent. A doctor may be cannot become too attached to their patient. But a patient who has a long term diseases definitely becomes emotionally attached to their doctor. And this is hard to break. He has been the best. He is a great doctor...compassionate, caring, knowledgable....and pro-active in my issues and understanding with how my anxiety works and protective of how other people treated me. I am devastated.
Besides that my permanent nanny rang today and quit....not for any reason that we have wrong with us....but for her own personality issues....and this also devastated me. There are so many changes and I cope badly with change. I find it a struggle.
I have to admit to you all. I have been severely depressed before this happened and Alan has now decreased his hours at work to support me and help me through this. We were starting to look into transplant more....into reproductive procedures and into many things with this haematologist and I find it difficult to just start with a new doctor who will need to learn about my unbelievable fear and anxiety and not approach me and scare me...this is hard.
Sorry about being so glum. Well I must sign off. I have a lot on my mind. Please, people..pray for me. Life if tough at the moment. Depression is debiltating and I don't know...sometimes it feels too much.
Pray for the new doctor...whoever she or he may be...pray I get through this.
Love you all,
Charisse
Monday, July 31, 2006
July 2006 entries
Saturday, July 29, 2006 7:40 AM CDT
***NEW PHOTOS***
Hello All,
long time no write! I have a bit to update on.
Firstly, I had a small medical issue that landed me in hospital for a couple of days, requiring some morphine for pain relief....things are still being "investigated" in regards to that issue...but at least things are better. I can be rather private about some things....some may know what I am talking about and some may not...but I am not going into any more details...just keep me in prayer. I may need surgery in relation to this issue..that is not yet set in concrete. Sometimes different issues with FA can be challenging and I have felt some areas to be very challenging lately....I am still trusting in Jesus for my miralce. He has been faithful to me even though sometimes it feels too rough. Although, there are many people out there who have had it more tough than me and you guys are really brave people.
Since my cat, Jemima died, I have actually felt miserable about her passing and it brought so many emotions out about death in general...I can be a pretty emotional gal sometimes...it has been tough! I really miss my precious cat. I don't know about you but when I was young...cats and kittens have been the only animals that have brightened my day and brought me joy...and it continues to have this effect...so not having Jemima around has been difficult. Obviously we have another cat, Matilda, but she and I never had the same "closeness" as Jemima and I did. However, I can't believe I am raving on about a cat..but it is important to me.
We got a NEW KITTEN! When Isaac saw the cat just before choosing..he announced it was a "daddy Jemima" and he "wants to take it back home"....and we called him Jerry. He is gorgeous and is only 9 weeks old. He is so sweet. He loves to be cuddled...which is just what I have needed....and Matilda seems to be taking him very well...no hissing or any type of really violent behaviour...she is still a young cat and loves to play...we can see them eyeing each other and getting ready to pounce...I am sure that they will "let go" and play properly soon. Matilda is such a rascal and always has such an "unimpressed" look on her face. Check out the photos of Jerry and Matilda in the photo section.
Also, because I have had a bit of a rough patch with feeling depressed...Alan took the week off and we went to Sellix Beach on holiday from Mon to Thurs last week. It was wonderful. I have never seen Isaac so happy...he was squealing...obviously so happy to be with just mummy and daddy and we were very relaxed the whole time...something that doesn't seem to happen with FA around...but we could forget about that and just enjoy. Alan was adding the pictures for me....so check if they are there...have a look...there are some lovely scenery photos of our Australian coast line....and hills in winter, sunsets and Isaac, Alan and I.....please have a look. We went to the beach and built sand castles even though it was so cold. We caught the horse and carriage over a jetty to Granite Island in Victor Habour and saw some whales! We went to Cape Jervis where the ferry leaves to go to Kangeroo Island. That is where the light house was and we took lots of beautiful photos...we checked out rabbit burrows together...Isaac thought that was exciting. We had a really good time together...just travelling and exploring and at night Isaac led us in many songs using his hand as a microphone and we cuddled up and watched a DVD after he was in bed....we just relaxed and had special family and couple time.
Anyway, please check out the photos because I will make sure Alan gets them there soon.
Please be sure to leave any messages in my guestbook. I find it exciting and encouraging!
I hope all of you who went to Camp Sunshine had a good time. I am sure that it was a mixture of feelings for many people!
Bless you and love you,
Charisse
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Saturday, July 8, 2006 8:19 AM CDT
Hello All,
WHAT an AMAZING weekend! It was awesome! This past weekend Alan and I traveled to Sydney and we attended a Christian Conference on Friday afternoon at the Acer Arena. Reinhard Bonki, an Evangelist with a powerful healing ministry in the Name of Jesus was speaking that afternoon! It was an amazing experience. I was still quite ill this weekend and was amazed that I survived! The message given by the Evangelist was powerful and I felt moved by the Holy Spirit! The prayer given to me also powerfully touched me and I was brought to tears...I knew the power of God was moving in that place Friday afternoon.
After this conference we headed out to Bondi where the Rodwells live. They had offered us a place to stay for the night. David Rodwell is 14 and he has FA....we have been chatting via IM and sometimes via phone and it was exciting knowing that we were going to meet! And it WAS! I had a great time. It was amazing! David, you are a great guy and I loved chatting with you! Cathy, Paul, Natalie...it was the greatest pleasure to be in your company and laugh and share! I cannot wait to see you guys again.....I felt heaps comfortable with you all!
On Saturday Ben Hilton who also has FA and he is 22 years old this month....he and his family joined Alan and I and the Rodwells for lunch. It was an amazing event....Ben, David and I got to spend some time together in our little groupee! Hehe...we got to chat....wow we chatted so much. It was great to meet other people with FA in Australia....this was an amazing event! Ben it was great to meet you and your family and I can't wait to meet you guys again.
David and I had an arm wrestle...everyone was cheering us on...boy David you are strong! Hehe.....I have to say that it was a good, decent arm wrestle....and for a girl...hehe...I am no weakling! Ha.,...still after a good fight...David won twice out of the three times and I won once...it was a close call though....great memories. Please go visit David's awesome site! The link is below..he is a great guy!
I am going to put some new photos of this great occasion in my photo section so check it out!
Love Charisse
***NEW PHOTOS***
Hello All,
long time no write! I have a bit to update on.
Firstly, I had a small medical issue that landed me in hospital for a couple of days, requiring some morphine for pain relief....things are still being "investigated" in regards to that issue...but at least things are better. I can be rather private about some things....some may know what I am talking about and some may not...but I am not going into any more details...just keep me in prayer. I may need surgery in relation to this issue..that is not yet set in concrete. Sometimes different issues with FA can be challenging and I have felt some areas to be very challenging lately....I am still trusting in Jesus for my miralce. He has been faithful to me even though sometimes it feels too rough. Although, there are many people out there who have had it more tough than me and you guys are really brave people.
Since my cat, Jemima died, I have actually felt miserable about her passing and it brought so many emotions out about death in general...I can be a pretty emotional gal sometimes...it has been tough! I really miss my precious cat. I don't know about you but when I was young...cats and kittens have been the only animals that have brightened my day and brought me joy...and it continues to have this effect...so not having Jemima around has been difficult. Obviously we have another cat, Matilda, but she and I never had the same "closeness" as Jemima and I did. However, I can't believe I am raving on about a cat..but it is important to me.
We got a NEW KITTEN! When Isaac saw the cat just before choosing..he announced it was a "daddy Jemima" and he "wants to take it back home"....and we called him Jerry. He is gorgeous and is only 9 weeks old. He is so sweet. He loves to be cuddled...which is just what I have needed....and Matilda seems to be taking him very well...no hissing or any type of really violent behaviour...she is still a young cat and loves to play...we can see them eyeing each other and getting ready to pounce...I am sure that they will "let go" and play properly soon. Matilda is such a rascal and always has such an "unimpressed" look on her face. Check out the photos of Jerry and Matilda in the photo section.
Also, because I have had a bit of a rough patch with feeling depressed...Alan took the week off and we went to Sellix Beach on holiday from Mon to Thurs last week. It was wonderful. I have never seen Isaac so happy...he was squealing...obviously so happy to be with just mummy and daddy and we were very relaxed the whole time...something that doesn't seem to happen with FA around...but we could forget about that and just enjoy. Alan was adding the pictures for me....so check if they are there...have a look...there are some lovely scenery photos of our Australian coast line....and hills in winter, sunsets and Isaac, Alan and I.....please have a look. We went to the beach and built sand castles even though it was so cold. We caught the horse and carriage over a jetty to Granite Island in Victor Habour and saw some whales! We went to Cape Jervis where the ferry leaves to go to Kangeroo Island. That is where the light house was and we took lots of beautiful photos...we checked out rabbit burrows together...Isaac thought that was exciting. We had a really good time together...just travelling and exploring and at night Isaac led us in many songs using his hand as a microphone and we cuddled up and watched a DVD after he was in bed....we just relaxed and had special family and couple time.
Anyway, please check out the photos because I will make sure Alan gets them there soon.
Please be sure to leave any messages in my guestbook. I find it exciting and encouraging!
I hope all of you who went to Camp Sunshine had a good time. I am sure that it was a mixture of feelings for many people!
Bless you and love you,
Charisse
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Saturday, July 8, 2006 8:19 AM CDT
Hello All,
WHAT an AMAZING weekend! It was awesome! This past weekend Alan and I traveled to Sydney and we attended a Christian Conference on Friday afternoon at the Acer Arena. Reinhard Bonki, an Evangelist with a powerful healing ministry in the Name of Jesus was speaking that afternoon! It was an amazing experience. I was still quite ill this weekend and was amazed that I survived! The message given by the Evangelist was powerful and I felt moved by the Holy Spirit! The prayer given to me also powerfully touched me and I was brought to tears...I knew the power of God was moving in that place Friday afternoon.
After this conference we headed out to Bondi where the Rodwells live. They had offered us a place to stay for the night. David Rodwell is 14 and he has FA....we have been chatting via IM and sometimes via phone and it was exciting knowing that we were going to meet! And it WAS! I had a great time. It was amazing! David, you are a great guy and I loved chatting with you! Cathy, Paul, Natalie...it was the greatest pleasure to be in your company and laugh and share! I cannot wait to see you guys again.....I felt heaps comfortable with you all!
On Saturday Ben Hilton who also has FA and he is 22 years old this month....he and his family joined Alan and I and the Rodwells for lunch. It was an amazing event....Ben, David and I got to spend some time together in our little groupee! Hehe...we got to chat....wow we chatted so much. It was great to meet other people with FA in Australia....this was an amazing event! Ben it was great to meet you and your family and I can't wait to meet you guys again.
David and I had an arm wrestle...everyone was cheering us on...boy David you are strong! Hehe.....I have to say that it was a good, decent arm wrestle....and for a girl...hehe...I am no weakling! Ha.,...still after a good fight...David won twice out of the three times and I won once...it was a close call though....great memories. Please go visit David's awesome site! The link is below..he is a great guy!
I am going to put some new photos of this great occasion in my photo section so check it out!
Love Charisse
Friday, June 30, 2006
June 2006 entries
Sunday, June 25, 2006 7:13 AM CDT
Friday 30th June 2006
***UPDATE***
Hello All,
I left last week's update on so if you missed what was happening you could catch up!
It has been a tough week this week. I have felt like I may have gotten a little better but still quite distressed with this very sore throat and swallowing problem. Also, I have been so lethargic. Today is the first time I think I have noticed a drastic improvement with my throat problem. It is less sore and easier to swallow...this is a good thing...however, on Monday I have an endoscopy scheduled just to look down my oesophagus for any nasties...this will help with my anxiety as well. it has gone through the roof! I am still on antifungal.
I had my infusion today. My levels last week of the IgG in the blood were really low and I am relieved I had my IVIG infusion today. I am praying I will not have a bad reaction. I tried to stretch the infusion back to 6 weekly, but with all this sickness and really low IgG levels....we are back at 4 weekly infusions. I should improve in the sickness level. Hoping my platelet count was only really, really low because I was really sick.
Isaac has been vulnerable all week..does not help when he sees me so distressed.
Also I have been really grieving over my cat...it has brought so much emotion about death out of my head...I have struggled with constant weeping during the day..the type where you try and stop it but it comes...
The autopsy of Jemima, our cat.....I can't believe what actually caused her to be so sick was this...it really made me angry and upset. She had a puncture wound in her intestine which had been there for 2 weeks from a foreign body...it had started festering and just became an out of control infection...no wonder no x-rays or ultrasounds could pick anything up...no wonder...we would have liked to have a go at fixing her...but we didn't know what was going on and she was getting really sick and we had already spent so much...I have actually felt regret about her dying...all I can do now is just let myself grieve...we will get another dear little kitten...we still have Matilda, our 3 year old cat....
So that is that......thanks for checking up on me!
Love Charisse
**********
Good Evening all,
it is Sunday night here. It has been a rough week. Firstly, my deepest sympathies and love to Brenda and her family. Robbie has now let go and is free of FA. Please support them and pray for them as they go through this hard journey. We love you guys.
As for an update on my family.....I want to talk about my cat...I know that my cat is nothing compared to that of which families are going through in losing their loved ones.,...so please know...for the sake of these families...I don't want to make any of this sound worse than losing someone you love......I am now going to update what happened this week in our familiy.
Our much loved cat, Jemima, died on Wednesday night after 5 days of being in hospital. Her wbc showed that she was seriously sick and we needed to open her up to see what it was...but were not guarenteed that she would live after all that....we had to let her go....we will find out what happened though..waiting for results...she was only 5 years old...Jemima has helped me throughout tough times with FA....sometimes an animal becomes your closest friend when you have down times...she cuddled me, let me cry on her and I loved her....I am very sad that she is gone. We told Isaac...the first night it didn't seem to register...but the next day he asked me and I told him the simple truth....he went real quite and leaned his head against his seat.....the only question he asked was "what about mummy being sick?"...my heart broke...I was hoping he was only referring to my cold...not the long term stuff and so tried to explain appropriately...poor sweet heart....I had to...... encourage him that we would go and buy a new baby cat for him.....that brightened his mood...but I have noticed some separation issues and I think he is grieving a bit over the cat. Poor love...Jemima was his favourite cat!
ok, besides that....I have been really unwell...let me give you the run down. I had ulcers in my mouth real bad. Well just over a week ago...I started getting a really sore throat and thought, "on no"...this has happened once before...in December...I got so sick with 40 degree C temperatures and in bed...not being able to swallow...I was so sick.,..well due to the ulcers and stuff I was on antibiotics...and then this happens...well my neck swelled up....I feel like my oesophagus is blocked off...I cough and throw things up...I can't swallow or eat properly...it has been unbelievably painful...rolling and crying on the floor.....rushed to the haematology clinic....platelets seriously down and scary......and my haematologist is off sick...other doctors unsure and being difficult...finally my son's paed helps out...my GP suspects fungal infection....but still really sick....finally my haem is back on board and they think it is a superficial fungal, candida...on antifungal and antibiotics.....if it is not better by Tuesday.,...on an antifungal that treats systemic infections...my neutriphils are 1300...praise God over 1000...but still low enough to make a fungal infection a little difficult...now if this big antifungal drug doesn't get rid of things...an endoscopy to see what is happening....and you know what I hate about FA...is that you always have to rule out a tumor.....FA patients always have some kind of cancer to check for...so treatment and diagnosis becomes scarier! I hate that....we just need to be safe....but because I have had this before and no difficulties inbetween...I am not jumping to any conclusions....but I still need to be careful.....I actually feel really unwell...faint and dizzy and my ears are piercing pain and have fluid on them and blocked...I still have a cold and a cough.....I have actually been unwell....so this is not unexpected and I have been on 4 lots of antibiotics...with a lower neutriphil count...fungal infections are to be expected...so I refuse to dwell on the worst...cancer...but it does worry me as it would anyone else. I just want to feel better and get rid of this pain....now my haematologist tells me that this type of candida that I have actually causes heaps of pain and they usually manage it with morphine...but I don't wish for that...another thing was to sedate me enough to make me less tense and lie in bed and rest for a week...but I don't want that either...hmm..what will my doctor think about all that this week.
So that has been my week....quite full on!
I have my infusion in a week...I extended my infusion by 2 weeks for the last 2 times...I hope that didn't make a difference with the infections I have had...I need to see my levels.....
Then in Two weeks we will be spending the weekend with an FA family in Syndey...the Rodwells...we are excited about that...we are also attending a Christian conference...Alan and I have not given up on the promises that we know and believe God has given us and the miracles He has promised us.
My sister looked beautiful today at 20 weeks pregnant!
Well, that is all for now....please keep Brenda (Robbie's mum)...in prayer. Please keep praying for Nicholas' miracle...keep Will in prayer with his trial....Ben Hilton doesn't have a tumor....YES! Ben Hilton is in Sydney, Australia...they had a terrible scare when he started having seizures...for a while there they thought he had a brain tumor...praise God it is not that...but demyelination of the neurons instead..I won't explain that....pleae pray for Nina Altmann who does have a bad brain tumor.......
I need to go...please pray for me.......
Love Charisse
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Sunday, June 18, 2006 6:29 AM CDT
Hello Everyone,
once again I thank you for your prayers....believe it or not I am sick again. I think I have re-caught something because I cannot swallow very well...it feels like I have a huge graze and apple in my throat and I have begun coughing more and feeling tired. I need it to go away...I have had enough. Although I should not complain as I know there are many FA families that are having a harder time than me at the moment. Alan and I are praying for those FAmilies. Please keep Robbie and Brenda uplifted in prayer. The last I heard, Robbie had taken a turn for the worst and I don't know where things are up to since the weekend...that family really need our support, love and prayer at the moment.
It is a relief to know that it is not just my immunity that is causing me to be suseptible to sickness right now. This is one of the coldest winters we have had in Australia for a while and almost everyone I know is sick. My mum and dad, my sister is actually quite unwell, Alan is also sick with this sore throat and cough....lots of people at church are away...everyone seems to be sick...not just mildly sick...but sick, sick. The GP did say there is a strain going around that is really putting people in bed even though they may not have an immune deficiency...so I am not the only one...It is amazing...I don't think I have seen so many people sick at the same time at winter.
Along with that, it seems that our cat, Jemima, has joined in on this sickness as well. She is actually seriously sick and yesterday had to be hospitalised. I know she is "just an animal" as some would say...but she is a very special part of our family and Isaac adores her! So of course it has made us all emotional dealing with her being sick. The worst part is that we don't actually know what is wrong with her yet....she was not responding to antibiotics at home and seemed to be declining....got severely dehydrated and ended up in hospital having IV therapy and x-rays and stuff....she may have something terminal now...they are not sure....but if she does...we may need to say "goodbye" to our family cat...as I said she isn't a person...but this is upsetting for us since we deal with so much emotion with FA and circumstances,,,this really hits your vulnerable emotions. I pray that she is going to pull through and have nothing too serious. I don't know! We first need to diagnose what she has before we can make a decision about anything! So she is still in hospital. We took Isaac to visit her today and he was really happy to see her (Isaac is 3 1/2 years old).
Well, please keep praying for FA families...keep praying for Nina, Robbie and his family, Nicholas who had some sniffles, Will in his trial, Ben Hilton in Australia (still trying to work out this probable tumor...and now querie infection in the brain) and Ryan who is going for a second transplant....there are plenty more..please keep praying for them.
Please keep praying for me...my mouth is still not healed completely from these ulcers....I have many appointments this week. I struggle with seeing FA families go through much and because I have FA myself I tend to feel very overwhelmed and extremely grieved..not only that...sometimes you worry about all of this happening to yourself and how do you cope with that......
But I want to put in some praise points! Little John is doing really well after his transplant and his platelets are in the 400,000's! Praise the Lord...keep praising Him for that!
My sister, Liesl, is 19 weeks pregnant today! Yay! I am going to be an Aunty! Isaac will have a cousin! They had their detailed ultrasound just this week which went well! I am excited...and I know Liesl is excited....aren't you sweetness? I have not shared on here yet that Liesl is going to have a baby! This is uplifting and good news in our family...we are all very excited....
Isaac did a pooh in the potty on Friday! Yay! And we danced and sang a little about it...he got two stamps and had a piece of cake.....it was a joyous time!
I am hoping to do a 8 1/2 hour shift on Friday in Day Surgery! In fact...I am doing it...I am believing that Jesus will make me well enough to do it. I have not worked much at all lately and I don't want to miss out on this permanent shift! So please pray I can go to work!
Isaac went to kindy/day care for the first time Friday morning and had a blast...my little man is growing up...I was a nervous wreck that day! Isn't it funny how you feel so protective over your little babies!
Well, I need to go. Bless you all and I will talk with you all soon.
Love Charisse
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Monday, June 12, 2006 6:09 AM CDT
Hello All,
well I didn't really enjoy my weekend. I have been sick all weekend and didnd't get to church and have not done much actually...but feel miserable...well try and laugh and have a good time...but you still feel miserable.
Isaac is feeling good again. He and Alan had a good daddy/son bonding time this weekend. Because I was really too unwell to do much, Alan and Isaac went out shopping and went on a train for a ride and went to church together and stuff...I stayed at home.
Last night was a shocka of a night. I was feeling very distressed last night. I have been feeling very overwhelmed by somethings the last couple of weeks and sometimes this hits me and I feel panicked and feel very distressed...you start crying and feeling weird...panic attack..they are horrible and I don't need them when I feel so awful already. My whole mouth is affected by mouth sores and ulcers and swelling ...I can hardly brush my teeth. I have been using cotton buds to help do my teeth and my special mouth wash of course...so because of pain and a bit of distress...well I was really distressed...I didn't end up falling asleep until around 4am this morning and so I feel very tired tonight and pray that I sleep...I need my mouth to heal and I need to be able to look after my energetic child!
Alan has comes down with something today and is feeling pretty rotten as well! My whole family has been sick!
Thanks to those who have been praying for me...it is much needed.
Please continue to pray for the FA families who all seem to be getting hit with one challenge or another! Sometimes it really feels crazy!
Please keep Robbie and Brenda in your prayers. I have not heard where things are at since last week...but they need your prayers.
Other people who need prayer...Ben Hilton, Nicholas Boggs, Nina Altmann and many more.
Bless you all and I hope you have a good week!
Love Charisse
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Thursday, June 8, 2006 8:22 AM CDT
Quick update,
did I say that Isaac had croup last week...he is now recovering but has a bad cold the poor love.
As for me...those abcsesses that I had have almost gone...Praise the Lord....but I have a bad, bad cold. I feel wiped out...I also have what looks like an ear infection and the respiratory infection that is going around and more normal ulcers have popped up in my mouth...hence I am on more antibiotics.....the state of my immunity cannot hold this up on its own with the amount of stress that my mind and body have been under. Please pray that I don't have my throat swell up and close off like last time and had 40 degree C temperatures.....I couldn't swallow anything to help my temp.....I hope that this doesn't get to that.
My haematologist has been away so my GP who is an ex-paed has been treating me...he is excellent...but it is good that I get in to see one of my faithful paed doctors tomorrow...who is actually Isaac's paed...just that he helps me out as well.
So much is going on....as I said another time....we have started a charity/organisation called FA Australia and one of our members is in a serious situation. I have permission to share from the family. Ben Hilton is a young man of age 22 (corrected) who lives in Australia and he has FA and they got a sudden, out of the blue shock to find a tumor in his brain...everything needs to be double confirmed but it may not be operable...but we will need to wait to hear what they have to say. Please, please, keep these people in your prayer...they went into hospital for something else and this was discovered....a huge shock...they are such a sweet and dear family.
Please continue to pray for Nina and her family...she had brain surgery this past week or two.
Pray for Nicholas...he has been having allergies to antibiotics and he needs these drugs to help him be well a lot of the time...we would hate for him to develop an allergy to most antibiotics.
Pray for Ryan who is looking at a second transplant....
Pray for Little John....and thank God that he is doing well.
Pray for Robbie who is on a ventilator and in critical condition....please lift them up in prayer.
There are many more children and adults who need prayer. Let us ban together and pray for them.
Bless you all,
Love Charisse
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Monday, June 5, 2006 8:53 AM CDT
Good Evening,
thanks to those who have been signing the guestbook and praying for me. My ulcers are still here....I went to the doctor and he described them to be more like abcesses...so I have been on oral penicillin antibiotics and it seems to, may be, be improving...but I still feel very miserable. I also woke with a yucky cold today. I am sure that all this has been set off by that stress a couple of weeks ago.
I would like to thank God for Nicholas...he is over the Pneumonia...or at least on the mend. Please keep him in your prayers.
Praise God for Little John and how well he is doing since his transplant.
Also I have a few prayer requests tonight....dear Robbie...he is in critical condition and really needs our prayers...Please pray for God's divine intervention and pray for Brenda as well...his mum.
Please pray for dear little Nina and Rachel, Tyler and Benjamin as they have had tough news about the tumor in Nina's brain. Please pray for the family! Bless that family Lord!
Ryan in NZ...his results had shown no change and last I heard they were most likely looking at a second transplant. These people are dear to my heart....please pray for them....
Well I am off to bed! I love you all and keep praying!
Love Charisse
Friday 30th June 2006
***UPDATE***
Hello All,
I left last week's update on so if you missed what was happening you could catch up!
It has been a tough week this week. I have felt like I may have gotten a little better but still quite distressed with this very sore throat and swallowing problem. Also, I have been so lethargic. Today is the first time I think I have noticed a drastic improvement with my throat problem. It is less sore and easier to swallow...this is a good thing...however, on Monday I have an endoscopy scheduled just to look down my oesophagus for any nasties...this will help with my anxiety as well. it has gone through the roof! I am still on antifungal.
I had my infusion today. My levels last week of the IgG in the blood were really low and I am relieved I had my IVIG infusion today. I am praying I will not have a bad reaction. I tried to stretch the infusion back to 6 weekly, but with all this sickness and really low IgG levels....we are back at 4 weekly infusions. I should improve in the sickness level. Hoping my platelet count was only really, really low because I was really sick.
Isaac has been vulnerable all week..does not help when he sees me so distressed.
Also I have been really grieving over my cat...it has brought so much emotion about death out of my head...I have struggled with constant weeping during the day..the type where you try and stop it but it comes...
The autopsy of Jemima, our cat.....I can't believe what actually caused her to be so sick was this...it really made me angry and upset. She had a puncture wound in her intestine which had been there for 2 weeks from a foreign body...it had started festering and just became an out of control infection...no wonder no x-rays or ultrasounds could pick anything up...no wonder...we would have liked to have a go at fixing her...but we didn't know what was going on and she was getting really sick and we had already spent so much...I have actually felt regret about her dying...all I can do now is just let myself grieve...we will get another dear little kitten...we still have Matilda, our 3 year old cat....
So that is that......thanks for checking up on me!
Love Charisse
**********
Good Evening all,
it is Sunday night here. It has been a rough week. Firstly, my deepest sympathies and love to Brenda and her family. Robbie has now let go and is free of FA. Please support them and pray for them as they go through this hard journey. We love you guys.
As for an update on my family.....I want to talk about my cat...I know that my cat is nothing compared to that of which families are going through in losing their loved ones.,...so please know...for the sake of these families...I don't want to make any of this sound worse than losing someone you love......I am now going to update what happened this week in our familiy.
Our much loved cat, Jemima, died on Wednesday night after 5 days of being in hospital. Her wbc showed that she was seriously sick and we needed to open her up to see what it was...but were not guarenteed that she would live after all that....we had to let her go....we will find out what happened though..waiting for results...she was only 5 years old...Jemima has helped me throughout tough times with FA....sometimes an animal becomes your closest friend when you have down times...she cuddled me, let me cry on her and I loved her....I am very sad that she is gone. We told Isaac...the first night it didn't seem to register...but the next day he asked me and I told him the simple truth....he went real quite and leaned his head against his seat.....the only question he asked was "what about mummy being sick?"...my heart broke...I was hoping he was only referring to my cold...not the long term stuff and so tried to explain appropriately...poor sweet heart....I had to...... encourage him that we would go and buy a new baby cat for him.....that brightened his mood...but I have noticed some separation issues and I think he is grieving a bit over the cat. Poor love...Jemima was his favourite cat!
ok, besides that....I have been really unwell...let me give you the run down. I had ulcers in my mouth real bad. Well just over a week ago...I started getting a really sore throat and thought, "on no"...this has happened once before...in December...I got so sick with 40 degree C temperatures and in bed...not being able to swallow...I was so sick.,..well due to the ulcers and stuff I was on antibiotics...and then this happens...well my neck swelled up....I feel like my oesophagus is blocked off...I cough and throw things up...I can't swallow or eat properly...it has been unbelievably painful...rolling and crying on the floor.....rushed to the haematology clinic....platelets seriously down and scary......and my haematologist is off sick...other doctors unsure and being difficult...finally my son's paed helps out...my GP suspects fungal infection....but still really sick....finally my haem is back on board and they think it is a superficial fungal, candida...on antifungal and antibiotics.....if it is not better by Tuesday.,...on an antifungal that treats systemic infections...my neutriphils are 1300...praise God over 1000...but still low enough to make a fungal infection a little difficult...now if this big antifungal drug doesn't get rid of things...an endoscopy to see what is happening....and you know what I hate about FA...is that you always have to rule out a tumor.....FA patients always have some kind of cancer to check for...so treatment and diagnosis becomes scarier! I hate that....we just need to be safe....but because I have had this before and no difficulties inbetween...I am not jumping to any conclusions....but I still need to be careful.....I actually feel really unwell...faint and dizzy and my ears are piercing pain and have fluid on them and blocked...I still have a cold and a cough.....I have actually been unwell....so this is not unexpected and I have been on 4 lots of antibiotics...with a lower neutriphil count...fungal infections are to be expected...so I refuse to dwell on the worst...cancer...but it does worry me as it would anyone else. I just want to feel better and get rid of this pain....now my haematologist tells me that this type of candida that I have actually causes heaps of pain and they usually manage it with morphine...but I don't wish for that...another thing was to sedate me enough to make me less tense and lie in bed and rest for a week...but I don't want that either...hmm..what will my doctor think about all that this week.
So that has been my week....quite full on!
I have my infusion in a week...I extended my infusion by 2 weeks for the last 2 times...I hope that didn't make a difference with the infections I have had...I need to see my levels.....
Then in Two weeks we will be spending the weekend with an FA family in Syndey...the Rodwells...we are excited about that...we are also attending a Christian conference...Alan and I have not given up on the promises that we know and believe God has given us and the miracles He has promised us.
My sister looked beautiful today at 20 weeks pregnant!
Well, that is all for now....please keep Brenda (Robbie's mum)...in prayer. Please keep praying for Nicholas' miracle...keep Will in prayer with his trial....Ben Hilton doesn't have a tumor....YES! Ben Hilton is in Sydney, Australia...they had a terrible scare when he started having seizures...for a while there they thought he had a brain tumor...praise God it is not that...but demyelination of the neurons instead..I won't explain that....pleae pray for Nina Altmann who does have a bad brain tumor.......
I need to go...please pray for me.......
Love Charisse
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Sunday, June 18, 2006 6:29 AM CDT
Hello Everyone,
once again I thank you for your prayers....believe it or not I am sick again. I think I have re-caught something because I cannot swallow very well...it feels like I have a huge graze and apple in my throat and I have begun coughing more and feeling tired. I need it to go away...I have had enough. Although I should not complain as I know there are many FA families that are having a harder time than me at the moment. Alan and I are praying for those FAmilies. Please keep Robbie and Brenda uplifted in prayer. The last I heard, Robbie had taken a turn for the worst and I don't know where things are up to since the weekend...that family really need our support, love and prayer at the moment.
It is a relief to know that it is not just my immunity that is causing me to be suseptible to sickness right now. This is one of the coldest winters we have had in Australia for a while and almost everyone I know is sick. My mum and dad, my sister is actually quite unwell, Alan is also sick with this sore throat and cough....lots of people at church are away...everyone seems to be sick...not just mildly sick...but sick, sick. The GP did say there is a strain going around that is really putting people in bed even though they may not have an immune deficiency...so I am not the only one...It is amazing...I don't think I have seen so many people sick at the same time at winter.
Along with that, it seems that our cat, Jemima, has joined in on this sickness as well. She is actually seriously sick and yesterday had to be hospitalised. I know she is "just an animal" as some would say...but she is a very special part of our family and Isaac adores her! So of course it has made us all emotional dealing with her being sick. The worst part is that we don't actually know what is wrong with her yet....she was not responding to antibiotics at home and seemed to be declining....got severely dehydrated and ended up in hospital having IV therapy and x-rays and stuff....she may have something terminal now...they are not sure....but if she does...we may need to say "goodbye" to our family cat...as I said she isn't a person...but this is upsetting for us since we deal with so much emotion with FA and circumstances,,,this really hits your vulnerable emotions. I pray that she is going to pull through and have nothing too serious. I don't know! We first need to diagnose what she has before we can make a decision about anything! So she is still in hospital. We took Isaac to visit her today and he was really happy to see her (Isaac is 3 1/2 years old).
Well, please keep praying for FA families...keep praying for Nina, Robbie and his family, Nicholas who had some sniffles, Will in his trial, Ben Hilton in Australia (still trying to work out this probable tumor...and now querie infection in the brain) and Ryan who is going for a second transplant....there are plenty more..please keep praying for them.
Please keep praying for me...my mouth is still not healed completely from these ulcers....I have many appointments this week. I struggle with seeing FA families go through much and because I have FA myself I tend to feel very overwhelmed and extremely grieved..not only that...sometimes you worry about all of this happening to yourself and how do you cope with that......
But I want to put in some praise points! Little John is doing really well after his transplant and his platelets are in the 400,000's! Praise the Lord...keep praising Him for that!
My sister, Liesl, is 19 weeks pregnant today! Yay! I am going to be an Aunty! Isaac will have a cousin! They had their detailed ultrasound just this week which went well! I am excited...and I know Liesl is excited....aren't you sweetness? I have not shared on here yet that Liesl is going to have a baby! This is uplifting and good news in our family...we are all very excited....
Isaac did a pooh in the potty on Friday! Yay! And we danced and sang a little about it...he got two stamps and had a piece of cake.....it was a joyous time!
I am hoping to do a 8 1/2 hour shift on Friday in Day Surgery! In fact...I am doing it...I am believing that Jesus will make me well enough to do it. I have not worked much at all lately and I don't want to miss out on this permanent shift! So please pray I can go to work!
Isaac went to kindy/day care for the first time Friday morning and had a blast...my little man is growing up...I was a nervous wreck that day! Isn't it funny how you feel so protective over your little babies!
Well, I need to go. Bless you all and I will talk with you all soon.
Love Charisse
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Monday, June 12, 2006 6:09 AM CDT
Hello All,
well I didn't really enjoy my weekend. I have been sick all weekend and didnd't get to church and have not done much actually...but feel miserable...well try and laugh and have a good time...but you still feel miserable.
Isaac is feeling good again. He and Alan had a good daddy/son bonding time this weekend. Because I was really too unwell to do much, Alan and Isaac went out shopping and went on a train for a ride and went to church together and stuff...I stayed at home.
Last night was a shocka of a night. I was feeling very distressed last night. I have been feeling very overwhelmed by somethings the last couple of weeks and sometimes this hits me and I feel panicked and feel very distressed...you start crying and feeling weird...panic attack..they are horrible and I don't need them when I feel so awful already. My whole mouth is affected by mouth sores and ulcers and swelling ...I can hardly brush my teeth. I have been using cotton buds to help do my teeth and my special mouth wash of course...so because of pain and a bit of distress...well I was really distressed...I didn't end up falling asleep until around 4am this morning and so I feel very tired tonight and pray that I sleep...I need my mouth to heal and I need to be able to look after my energetic child!
Alan has comes down with something today and is feeling pretty rotten as well! My whole family has been sick!
Thanks to those who have been praying for me...it is much needed.
Please continue to pray for the FA families who all seem to be getting hit with one challenge or another! Sometimes it really feels crazy!
Please keep Robbie and Brenda in your prayers. I have not heard where things are at since last week...but they need your prayers.
Other people who need prayer...Ben Hilton, Nicholas Boggs, Nina Altmann and many more.
Bless you all and I hope you have a good week!
Love Charisse
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Thursday, June 8, 2006 8:22 AM CDT
Quick update,
did I say that Isaac had croup last week...he is now recovering but has a bad cold the poor love.
As for me...those abcsesses that I had have almost gone...Praise the Lord....but I have a bad, bad cold. I feel wiped out...I also have what looks like an ear infection and the respiratory infection that is going around and more normal ulcers have popped up in my mouth...hence I am on more antibiotics.....the state of my immunity cannot hold this up on its own with the amount of stress that my mind and body have been under. Please pray that I don't have my throat swell up and close off like last time and had 40 degree C temperatures.....I couldn't swallow anything to help my temp.....I hope that this doesn't get to that.
My haematologist has been away so my GP who is an ex-paed has been treating me...he is excellent...but it is good that I get in to see one of my faithful paed doctors tomorrow...who is actually Isaac's paed...just that he helps me out as well.
So much is going on....as I said another time....we have started a charity/organisation called FA Australia and one of our members is in a serious situation. I have permission to share from the family. Ben Hilton is a young man of age 22 (corrected) who lives in Australia and he has FA and they got a sudden, out of the blue shock to find a tumor in his brain...everything needs to be double confirmed but it may not be operable...but we will need to wait to hear what they have to say. Please, please, keep these people in your prayer...they went into hospital for something else and this was discovered....a huge shock...they are such a sweet and dear family.
Please continue to pray for Nina and her family...she had brain surgery this past week or two.
Pray for Nicholas...he has been having allergies to antibiotics and he needs these drugs to help him be well a lot of the time...we would hate for him to develop an allergy to most antibiotics.
Pray for Ryan who is looking at a second transplant....
Pray for Little John....and thank God that he is doing well.
Pray for Robbie who is on a ventilator and in critical condition....please lift them up in prayer.
There are many more children and adults who need prayer. Let us ban together and pray for them.
Bless you all,
Love Charisse
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Monday, June 5, 2006 8:53 AM CDT
Good Evening,
thanks to those who have been signing the guestbook and praying for me. My ulcers are still here....I went to the doctor and he described them to be more like abcesses...so I have been on oral penicillin antibiotics and it seems to, may be, be improving...but I still feel very miserable. I also woke with a yucky cold today. I am sure that all this has been set off by that stress a couple of weeks ago.
I would like to thank God for Nicholas...he is over the Pneumonia...or at least on the mend. Please keep him in your prayers.
Praise God for Little John and how well he is doing since his transplant.
Also I have a few prayer requests tonight....dear Robbie...he is in critical condition and really needs our prayers...Please pray for God's divine intervention and pray for Brenda as well...his mum.
Please pray for dear little Nina and Rachel, Tyler and Benjamin as they have had tough news about the tumor in Nina's brain. Please pray for the family! Bless that family Lord!
Ryan in NZ...his results had shown no change and last I heard they were most likely looking at a second transplant. These people are dear to my heart....please pray for them....
Well I am off to bed! I love you all and keep praying!
Love Charisse
Wednesday, May 31, 2006
May 2006 entries
Thursday, May 25, 2006 7:53 AM CDT
***update***
Monday 29th May
Just thought I would update quickly. I had a very stressful week last week. As a result I am very tired. I feel like I have pulled every muscle in my chest and back and now I have yucky mouth ulcers in full bloom in my mouth and my lip is slightly swollen...lips going dry. I actually feel quite miserable. I know it is the aftermath of me being very stressed last week almost every day. I was very emotional and had some panic attacks. Now I am paying the price...so it seems...but as my pyschologist says and my family says..."dont' beat yourself up, you have been through a lot and are dealing with a lot". Thank you guys for being there when I am miserable. Thanks for reassuring me. I really do appreciate it.
Please pray for my mouth. It is really sore and quite swollen inside. I feel quite miserable. Otherwise...I suppose you could say,....things are going ok.
Bless you guys,
Love Charisse
***
Hello All,
well this week has been a very emotional week.
First of all..my IVIG went well and I had no bad reactions this past week...in fact I reacted better to the stuff than I usually do.
I had another type of doctor's appointment on Monday just gone. I am deliberately leaving out specifics because I don't really want to talk much about the topic. Anyway, I struggled with the appointment and I think the doctor could have come down from the "doctor world" to consider what I go through with FA and life sometimes. I got very upset at this appointment. I was already anxious. I am not pleased to say that I yelled at him (nicely.....) and felt a bit aggressive and frustrated...sometimes you just think doctors don't "get it" and you feel harrassed and annoyed. I don't know this doctor and I know a main problem is that he doesn't know me and the anxiety that I deal with. However, my haematologist wrote a lot about that and he should have had his guard up more than he did.
You know when you feel like your heart and soul are hurting deep down and it is hard to tell someone how it is hurting and why...but you just cry...big bellowing crying. You just feel so upset you can't help it. It just comes and you can't stop it. Well the appointment set off some emotions that I tend to bury a bit...and then all the "Transplant" and chromosome changes and blast count issues and everything just dominated my mind and the emotions feel like they are out of control. Today I was crying and crying and I heard my beautiful boy, Isaac wake. I tried to mop up my tears and stifle the sniffles but I just cried deep cries even more. I thought if I ignored Isaac...he would think something was wrong. SO I walked into his room and he looked at me....and I said, "can I have a cuddle?"...and through my tears as well. He reached out. Isaac is so compassionate and I praise God for him. He will sit there and mop my tears with his hands. He won't expect anything. He just gives me a hug. He is so compassionate. I talk to him about when mummy feels a little sad about being sick. And I tell him I love him and love daddy...I am sure Isaac knows that I am not cross at him and love him. He never reacts badly....he is so sweet....and then all of a sudden when the tears finally stop....we will be laughing. Isaac gives me a grin and I can't help but kiss him on the face and we laugh and end up playing tickle. What a God given treasure Isaac is. I always try to not let him see me crying but when he does see me...I think God is so gracious...and Isaac is so compassionate...he knows it is ok.....I am just emotional....and I think God protects him. Everyone who meets Isaac sees Isaac's joy. He feels stable and never acts weird when I am there or even with other people. It is such a relief. He is such a comfort. I am so glad that I have Isaac. What a joy he is....and he blesses me with our close relationship. We are each other's buddies. Praise God that Isaac is such a sweetie and that God protects him when he does see me cry.
For those who don't know me. I am not crying all the time! No, I actually do love my life. I enjoy being a mum and a wife. I long for more children. Isaac and I have a great time of going to playgroup and kindergym....oh and how hyperactive has he been! He has been so active and laughing and especially...I think our cats are a bit annoyed. Ha! He runs after them all the time and when they are outside he demands that they are inside.....and when he is outside...they must be outside...they must play his games.
In the background transplant and procedures are still being put into place while we wait on what God wants us to do. We still strongly believe in the healing power of God and never want to restrict what He wants to do by "not listening" and just going ahead with things. We are waiting for His divine timing. But I struggle with transplant so much. It is so hard guys. I am really having a difficult week. I really struggle.
But Praise God that I am 28 and married for 7 years and have a baby! God is good. There is hope...it is just that sometimes it feels lke the hope is gone. If I focus on the things of this world I feel so discouraged. But if I focus on the things of God I feel hope and love and encouragement. Jesus is an awesome God. If you don't know Him....I encourage you to seek Him. There is no peace like the peace that you get when you have Jesus.
I want to thank my husband, Alan for being such a support to me spiritually and physically. We face so many decisions and yet Alan is so set on helping me, guarding my heart with what matters to me and seeking God for the right direction in our lives. I can pour my heart out to Alan and feel reassurance come. I thank you Alan for being my husband and for being a great daddy!
Well, wow, I have felt emotional just writing this update. It helps to know you are all there and all supporting me as well. Please write in the guestbook to let me know you have stopped by.
Please keep praying for Nicholas with the pneumonia he had. Please keep praying for Ryan in NZ....they said on their update that it looks like his engraftment may be increasing...Praise the Lord! Continue to pray for Robbie as they work out what is going on with his bloods. There are so many more FA children and adults that need out prayer. You guys all mean so much to me!
Well, now that I have written a book. I am going to go. I love you all.
Love Charisse
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Wednesday, May 17, 2006 7:42 AM CDT
Good Evening Everyone!
It was my birthday today! I am 28 years old and feeling very emotional about the whole thing. I am very happy. I am so grateful to Jesus that He has allowed me to still be alive and be married to a wonderful husband, Alan and have a wonderful child, Isaac. As you know many people who have FA do not make it into adulthood and as I face the challenges with my bone marrow chromosome changes and blast count...I count every birthday as a blessing and as a result have felt very emotional.
I got some surprise flowers. I had been weeping this morning about some things....and went to kindergym and when I came back some beautiful flowers were at my door..thinking they were may be from Alan....I soon discovered that they were from our dear friends Stephen and Leah who we have not been able to catch up for ages....as soon as I read the card I burst out in tears overwhelmed by the love that has been expressed to me over mother's day and my birthday.
Mum, thank you for the flowers....Alan thanks for my new CD of David Phelps...my favourite Christian singer who inspires me with my song writing and singing!
Thanks for the chronicles of Narnia and Isaac I thank you too since it was also from you.
Thanks for the special clothing, Liesl and Tim and thanks for the great novel....and mum and dad..thanks for the flowers and the beautiful cross pendent necklace! Wow...I feel spoilt...Denise..thank you for your love and friendship. I look forward to our special day tomorrow with lunch! I have so much to be thankful for. You guys have gone out of your way to make me feel special. I have tears writing this.
My appointment with my haematologist on Monday was cancelled due to my doctor being "snowed" in at NZ! I did have a panic and been feeling vulnerable not having him around for my infusion that will be happening this Friday. But he has spoken with the doctor that I trust at the hospital about what to do if I have another bad reaction. I am very nervous about this...I don't want the headaches...please pray against them.
Also, I have exciting news. Alan and I have started a charity for FA Australians. Australia itself has had no support for FA. FA patients have been lonely and caught in emotions that no one has understood. I was so lonely growing up without support with FA. These patients have needed people here that understand and can direct them to proper doctors for FA and also understand how they are feeling. We are connecting patients together and families are meeting each other. We have a proper board of directors filled up with haematologists and lab technicians, a psychologist, a minister and eventually nurses and many more....we had our first board meeting a couple of weeks ago and we will be looking for grants for certain things...may be even research grants...the paper work is filled out and the official opening of the charity was in February just gone. This is exciting and we are blessed that God has chosen us to do this. It has been much needed.
So if you want to check out our website that is still being put together just go to www.fanconi.org.au
Well, that is all I have to say for the moment. Bless you all. Love you all and take care.
Please continue to pray for Nicholas Boggs who has had pneumonia and Robbie whos counts have dropped and they are trying to work out what was going on and Ryan in NZ who engraftment had dropped to 21% and they were waiting on the doctors cue as to what to do next.
Pray for all these people.
Bless you and good night.
Love Charisse
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Sunday, May 14, 2006 6:35 AM CDT
Hello All,
Happy Mother's Day to all those mothers out there!
Yes, I had a great mother's day today! Alan and Isaac woke me up. I had breakfast in bed with bacon and eggs. Isaac ran in announcing it was "happy birthday" with the present. Alan and Isaac gave me a beautiful, gold locket with "special mum" written on it and "with love always"....and it had some lovely pictures of Isaac in it. I also got some fluffly, pink slippers! Haha!
We went to church and I got given a flower to put on my top! It was a good service.
Came home and checked in on Alan's mum...Denise...Happy Mother's Day!
Had a family dinner with my family at home! Thanks Alan...what a great 3 course meal you made! It was lovely and I felt quite spoilt! So did mum and dad and Liesl and Tim I am sure!
Well, on Friday night...I am back tracking a bit...I had my b-day dinner with the family..both sides...and I really enjoyed having them all there.
Thank you to Mum, Dad, Alex, Denise, Liesl, Tim and Darren....and of course Alan and Isaac.....for coming to the dinner because it really meant a lot to me! The rest of the family who could not make it...that was totally ok and thank you for trying to come! I appreciate you all!
My b-day is actually on Wednesday this week! I will be 28 years old! Ha!
Tomorrow I have a haematologist appointment and on Friday my IVIG infusion. I sure hope I don't have that bad reaction again because that was not fun!
Otherwise, bless you all and goodnight!
Love Charisse
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Friday, May 5, 2006 2:08 AM CDT
Well this week has been fun!
I had no appointments this week. I was SO busy..just having quality time with Isaac. He is such a dear boy!
On Monday Isaac and I attended a new playgroup. It is very new so there were only 4 other mums there as well as myself. It is so different to kindergym. Kindergym is always on the go and you always are watching your kids climb over all the equipement and you are always interacting with your kids. At playgroup...well at this one....the parents sat around more while the children did activities....the parents had free tea and coffee (not that I drink that..I am a hot chocolate or milo drinker). I actually did help some of the children interact together and build train stations and blocks and all...I am so used to being on Isaac's level...I get nervous settling down to talk with the parents! Ha....it feels weird.
Tuesday my mum came and helped me. That was a pretty relaxing day. Alan had a business meeting on Tuesday night and so did my dad...so mum cooked me a new recipe and Isaac, mum and I had a candle light dinner (really it was to try and disguise the brocholi I had hidden in Isaac's scrambled egg...hehe!)...but it was nice...mum's recipe was nice...thanks mum!
Wednesday Isaac and I went to our usual kindergym session! That was fun because it is not new and I know the mums and we always sit down at the cafe for lunch afterwards and they are my friends as well as Isaac's friends. Isaac ran into kindergym and yelled "hello" to all his friends since we have had a 2 week break with school holidays!
Thursday, Alan's mum came and visited me. I slept in and we had a nice day around the house. Isaac pulled the curtain in his room down and Denise and I carried out "operation curtain"...Denise did most of the handiwork....hehe...she did very well...so that was the excitement for the day.
Friday, today...nanny Jean came and I was supposed to go to work but the hospital told me they didn't need me today.....so I was at home and we decided to go to another play group and check it out. Isaac did painting and played with play doe.....well...got to get going...got a birthday party on tonight. I have been feeling much better this week! It is so good to feel well....I sure am not looking forward to my next IVIG...thank the Lord that I extended it another 2 weeks.....
Got to go!
Love Charisse
***update***
Monday 29th May
Just thought I would update quickly. I had a very stressful week last week. As a result I am very tired. I feel like I have pulled every muscle in my chest and back and now I have yucky mouth ulcers in full bloom in my mouth and my lip is slightly swollen...lips going dry. I actually feel quite miserable. I know it is the aftermath of me being very stressed last week almost every day. I was very emotional and had some panic attacks. Now I am paying the price...so it seems...but as my pyschologist says and my family says..."dont' beat yourself up, you have been through a lot and are dealing with a lot". Thank you guys for being there when I am miserable. Thanks for reassuring me. I really do appreciate it.
Please pray for my mouth. It is really sore and quite swollen inside. I feel quite miserable. Otherwise...I suppose you could say,....things are going ok.
Bless you guys,
Love Charisse
***
Hello All,
well this week has been a very emotional week.
First of all..my IVIG went well and I had no bad reactions this past week...in fact I reacted better to the stuff than I usually do.
I had another type of doctor's appointment on Monday just gone. I am deliberately leaving out specifics because I don't really want to talk much about the topic. Anyway, I struggled with the appointment and I think the doctor could have come down from the "doctor world" to consider what I go through with FA and life sometimes. I got very upset at this appointment. I was already anxious. I am not pleased to say that I yelled at him (nicely.....) and felt a bit aggressive and frustrated...sometimes you just think doctors don't "get it" and you feel harrassed and annoyed. I don't know this doctor and I know a main problem is that he doesn't know me and the anxiety that I deal with. However, my haematologist wrote a lot about that and he should have had his guard up more than he did.
You know when you feel like your heart and soul are hurting deep down and it is hard to tell someone how it is hurting and why...but you just cry...big bellowing crying. You just feel so upset you can't help it. It just comes and you can't stop it. Well the appointment set off some emotions that I tend to bury a bit...and then all the "Transplant" and chromosome changes and blast count issues and everything just dominated my mind and the emotions feel like they are out of control. Today I was crying and crying and I heard my beautiful boy, Isaac wake. I tried to mop up my tears and stifle the sniffles but I just cried deep cries even more. I thought if I ignored Isaac...he would think something was wrong. SO I walked into his room and he looked at me....and I said, "can I have a cuddle?"...and through my tears as well. He reached out. Isaac is so compassionate and I praise God for him. He will sit there and mop my tears with his hands. He won't expect anything. He just gives me a hug. He is so compassionate. I talk to him about when mummy feels a little sad about being sick. And I tell him I love him and love daddy...I am sure Isaac knows that I am not cross at him and love him. He never reacts badly....he is so sweet....and then all of a sudden when the tears finally stop....we will be laughing. Isaac gives me a grin and I can't help but kiss him on the face and we laugh and end up playing tickle. What a God given treasure Isaac is. I always try to not let him see me crying but when he does see me...I think God is so gracious...and Isaac is so compassionate...he knows it is ok.....I am just emotional....and I think God protects him. Everyone who meets Isaac sees Isaac's joy. He feels stable and never acts weird when I am there or even with other people. It is such a relief. He is such a comfort. I am so glad that I have Isaac. What a joy he is....and he blesses me with our close relationship. We are each other's buddies. Praise God that Isaac is such a sweetie and that God protects him when he does see me cry.
For those who don't know me. I am not crying all the time! No, I actually do love my life. I enjoy being a mum and a wife. I long for more children. Isaac and I have a great time of going to playgroup and kindergym....oh and how hyperactive has he been! He has been so active and laughing and especially...I think our cats are a bit annoyed. Ha! He runs after them all the time and when they are outside he demands that they are inside.....and when he is outside...they must be outside...they must play his games.
In the background transplant and procedures are still being put into place while we wait on what God wants us to do. We still strongly believe in the healing power of God and never want to restrict what He wants to do by "not listening" and just going ahead with things. We are waiting for His divine timing. But I struggle with transplant so much. It is so hard guys. I am really having a difficult week. I really struggle.
But Praise God that I am 28 and married for 7 years and have a baby! God is good. There is hope...it is just that sometimes it feels lke the hope is gone. If I focus on the things of this world I feel so discouraged. But if I focus on the things of God I feel hope and love and encouragement. Jesus is an awesome God. If you don't know Him....I encourage you to seek Him. There is no peace like the peace that you get when you have Jesus.
I want to thank my husband, Alan for being such a support to me spiritually and physically. We face so many decisions and yet Alan is so set on helping me, guarding my heart with what matters to me and seeking God for the right direction in our lives. I can pour my heart out to Alan and feel reassurance come. I thank you Alan for being my husband and for being a great daddy!
Well, wow, I have felt emotional just writing this update. It helps to know you are all there and all supporting me as well. Please write in the guestbook to let me know you have stopped by.
Please keep praying for Nicholas with the pneumonia he had. Please keep praying for Ryan in NZ....they said on their update that it looks like his engraftment may be increasing...Praise the Lord! Continue to pray for Robbie as they work out what is going on with his bloods. There are so many more FA children and adults that need out prayer. You guys all mean so much to me!
Well, now that I have written a book. I am going to go. I love you all.
Love Charisse
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Wednesday, May 17, 2006 7:42 AM CDT
Good Evening Everyone!
It was my birthday today! I am 28 years old and feeling very emotional about the whole thing. I am very happy. I am so grateful to Jesus that He has allowed me to still be alive and be married to a wonderful husband, Alan and have a wonderful child, Isaac. As you know many people who have FA do not make it into adulthood and as I face the challenges with my bone marrow chromosome changes and blast count...I count every birthday as a blessing and as a result have felt very emotional.
I got some surprise flowers. I had been weeping this morning about some things....and went to kindergym and when I came back some beautiful flowers were at my door..thinking they were may be from Alan....I soon discovered that they were from our dear friends Stephen and Leah who we have not been able to catch up for ages....as soon as I read the card I burst out in tears overwhelmed by the love that has been expressed to me over mother's day and my birthday.
Mum, thank you for the flowers....Alan thanks for my new CD of David Phelps...my favourite Christian singer who inspires me with my song writing and singing!
Thanks for the chronicles of Narnia and Isaac I thank you too since it was also from you.
Thanks for the special clothing, Liesl and Tim and thanks for the great novel....and mum and dad..thanks for the flowers and the beautiful cross pendent necklace! Wow...I feel spoilt...Denise..thank you for your love and friendship. I look forward to our special day tomorrow with lunch! I have so much to be thankful for. You guys have gone out of your way to make me feel special. I have tears writing this.
My appointment with my haematologist on Monday was cancelled due to my doctor being "snowed" in at NZ! I did have a panic and been feeling vulnerable not having him around for my infusion that will be happening this Friday. But he has spoken with the doctor that I trust at the hospital about what to do if I have another bad reaction. I am very nervous about this...I don't want the headaches...please pray against them.
Also, I have exciting news. Alan and I have started a charity for FA Australians. Australia itself has had no support for FA. FA patients have been lonely and caught in emotions that no one has understood. I was so lonely growing up without support with FA. These patients have needed people here that understand and can direct them to proper doctors for FA and also understand how they are feeling. We are connecting patients together and families are meeting each other. We have a proper board of directors filled up with haematologists and lab technicians, a psychologist, a minister and eventually nurses and many more....we had our first board meeting a couple of weeks ago and we will be looking for grants for certain things...may be even research grants...the paper work is filled out and the official opening of the charity was in February just gone. This is exciting and we are blessed that God has chosen us to do this. It has been much needed.
So if you want to check out our website that is still being put together just go to www.fanconi.org.au
Well, that is all I have to say for the moment. Bless you all. Love you all and take care.
Please continue to pray for Nicholas Boggs who has had pneumonia and Robbie whos counts have dropped and they are trying to work out what was going on and Ryan in NZ who engraftment had dropped to 21% and they were waiting on the doctors cue as to what to do next.
Pray for all these people.
Bless you and good night.
Love Charisse
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Sunday, May 14, 2006 6:35 AM CDT
Hello All,
Happy Mother's Day to all those mothers out there!
Yes, I had a great mother's day today! Alan and Isaac woke me up. I had breakfast in bed with bacon and eggs. Isaac ran in announcing it was "happy birthday" with the present. Alan and Isaac gave me a beautiful, gold locket with "special mum" written on it and "with love always"....and it had some lovely pictures of Isaac in it. I also got some fluffly, pink slippers! Haha!
We went to church and I got given a flower to put on my top! It was a good service.
Came home and checked in on Alan's mum...Denise...Happy Mother's Day!
Had a family dinner with my family at home! Thanks Alan...what a great 3 course meal you made! It was lovely and I felt quite spoilt! So did mum and dad and Liesl and Tim I am sure!
Well, on Friday night...I am back tracking a bit...I had my b-day dinner with the family..both sides...and I really enjoyed having them all there.
Thank you to Mum, Dad, Alex, Denise, Liesl, Tim and Darren....and of course Alan and Isaac.....for coming to the dinner because it really meant a lot to me! The rest of the family who could not make it...that was totally ok and thank you for trying to come! I appreciate you all!
My b-day is actually on Wednesday this week! I will be 28 years old! Ha!
Tomorrow I have a haematologist appointment and on Friday my IVIG infusion. I sure hope I don't have that bad reaction again because that was not fun!
Otherwise, bless you all and goodnight!
Love Charisse
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Friday, May 5, 2006 2:08 AM CDT
Well this week has been fun!
I had no appointments this week. I was SO busy..just having quality time with Isaac. He is such a dear boy!
On Monday Isaac and I attended a new playgroup. It is very new so there were only 4 other mums there as well as myself. It is so different to kindergym. Kindergym is always on the go and you always are watching your kids climb over all the equipement and you are always interacting with your kids. At playgroup...well at this one....the parents sat around more while the children did activities....the parents had free tea and coffee (not that I drink that..I am a hot chocolate or milo drinker). I actually did help some of the children interact together and build train stations and blocks and all...I am so used to being on Isaac's level...I get nervous settling down to talk with the parents! Ha....it feels weird.
Tuesday my mum came and helped me. That was a pretty relaxing day. Alan had a business meeting on Tuesday night and so did my dad...so mum cooked me a new recipe and Isaac, mum and I had a candle light dinner (really it was to try and disguise the brocholi I had hidden in Isaac's scrambled egg...hehe!)...but it was nice...mum's recipe was nice...thanks mum!
Wednesday Isaac and I went to our usual kindergym session! That was fun because it is not new and I know the mums and we always sit down at the cafe for lunch afterwards and they are my friends as well as Isaac's friends. Isaac ran into kindergym and yelled "hello" to all his friends since we have had a 2 week break with school holidays!
Thursday, Alan's mum came and visited me. I slept in and we had a nice day around the house. Isaac pulled the curtain in his room down and Denise and I carried out "operation curtain"...Denise did most of the handiwork....hehe...she did very well...so that was the excitement for the day.
Friday, today...nanny Jean came and I was supposed to go to work but the hospital told me they didn't need me today.....so I was at home and we decided to go to another play group and check it out. Isaac did painting and played with play doe.....well...got to get going...got a birthday party on tonight. I have been feeling much better this week! It is so good to feel well....I sure am not looking forward to my next IVIG...thank the Lord that I extended it another 2 weeks.....
Got to go!
Love Charisse
Sunday, April 30, 2006
April 2006 entries
Saturday, April 29, 2006 6:05 AM CDT
Good Evening!
Just thought I would give a quick update.
Saw my haematologist on Monday just gone. I was a little stressed at this appointment...I think just winding down from the appointment with the transplantor. Nothing new on my blast count or other counts.....I still Praise God that the blast count is down to 6% from 14%...but know there is a long way to go yet in working through all of this.
One thing though...even though we don't know if we will go ahead with transplant....I now do have a unrelated matched donor who would be ready in 4 weeks time. However, we have not decided on anything and are waiting for God to guide us further.
Unfortunately I had that nasty reaction with IVIG infusion last time so my next infusion in one week has been delayed for another 3 weeks. It has taken me a long while to recover so if it happens again this time...they think admitting me and giving me appropriate pain relief will help....also....changing my IVIG product to one that may not affect me in this horrible way...I had what they call "aseptic mennigitis"...it is not an infection but nasty inflammation of the brain. It was not nice.
Today Alan, Isaac and I went to Marialta Falls. We had a picnic lunch and walked to the one of the waterfalls. Isaac did very well because he walked the whole way...was carried half way back...but he thoroughly loved the outing. I think we were walking for 1.5 hours! It was beautiful and made me feel so refreshed! Now, haha...my legs are SO sore!
So that would be all I think.
Bless you all,
Love Charisse
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Sunday, April 23, 2006 5:25 AM CDT
Hello All,
I have great news! My blast count is down to 6%!!!!! YES! I know this is still not under 5%...but it is sure a LOT better than 14%. At the beginning of the year...well in February I had my bone marrow biopsy/aspiration and it showed a blast count of 13%....I had a second biopsy and aspiration in March to confirm it and it came back at 14%. To be honest I was feeling absolutely terrified about this whole pre-leukaemia thing. Oh, I still am quite scared about this. We have been on such a journey with FA and with our faith in Jesus...believing that one day Jesus will heal me completely...not because we made that up but because we honestly know that God spoke to us about it a long time ago. I have been waiting on God. A transplant was never a decision for us because of certain things and because of what we believed God had planned for us...then we got the high blast count and I didn't know what to do....I was terrified...and we have been doing bone marrow matching and planning in the background for transplant. But it is so hard to plan for a transplant when my whole being does not feel it is right for me...and I don't feel one ounce of peace about it(even though medically I need it). We have been praying and praying for breakthrough...for God to show us the way and if you remember we went to a Christian Conferencec a few weeks ago and God spoke to me powerfully there. I was so depressed at that meeting because of the circumstances...so afraid....and I have to be honest....because of certain issues...transplant has never been recomended for me and emotionally I just have had so much trouble handling it all. At this meeting God reassured me that it is ok to be afraid and that everything is under control.
Anyway, the transplant team decided to take the same sample again ( not a new one) and re-check it....and it came out at 6% and they are pretty certain with this result. It is not a new sample...it is the old....and I know people could try and explain why things are different....I myself, being a nurse, know that you have human error and all sorts of things.....but 6% is very different to 14% and I am very pleased with that. I still have lots of decisions to make....FA is still here........I still have to look at transplant in the background while waiting on God...but God is showing me the way and these results are a sign from God...it is God who has done this....there has been a LOT of prayer...you would not know how full on it has been. Praise the Lord.....
So, yes, I met the transplantor for the first time on Friday. I didn't know these results then...but I was very scared. I don't handle meeting doctors very well because of things that have happened in the past with them...causing post traumatic stress...I won't go into it. I had prepared myself for this meeting for ages....and what do I do...I go completely quiet. I was so nervous and so anxious that I ended up in complete pain. I couldn't bring myself to even face the transplantor in the eye and I couldn't get my mouth moving and my brain went completely dead. Alan had to do all the talking for me. Praise the Lord I didn't faint...but the whole time I was petrified of this guy who was actually quite nice I think...(from what I saw through my anxiety). He didn't try and touch me or do anything....despite him keeping his distance I felt very traumatised over the whole thing and very threatened! I really have difficulties with new doctors....especially talking about transplant!
I was just wanting to get my repeat blast count and I was scared that he was going to say it was 18% or something (even though I already had the results to this slide at 14%)...my mind played so many tricks I was just so scared. Finally Alan said, "what are the results? Charisse is frightened that they are worse than what she already has"...and I heard him say, "well she shouldn't be"...and then I heard, "they are 6%"...of course...I couldn't believe how they had suddenly changed from 14 to 6%. I know that for FA.....any type of blast count is dangerous and chromosome changes can already make things complicated...but I hope someone appreciates the fact that a lower blast count is less complicated.....I did smile once or twice at the guy when I managed to but left totally in a blur.....
Anyway, so that is my news.
Also, I ended up having to have 3 days of higher doses of prednisolone to get rid of the brain inflammation that I had from my IVIG reaction. The headache is still in my right eye and temple.....but heaps better now. Praise the Lord.
The calcified lump in my breast that we were supposed to be doing laser therapy had to be put on hold as we just investigate the slight risk that laser therapy can have on FA and chromosome breakage...just checking...but the evening primorose oil that I am taking for the pain seems to help a bit...it apparently starts working better after being on this for 6 weeks to 3 months.
Tomorrow, Monday...I have a regular haematology/oncology appointment.
Otherwise it should be an eventful week with a public holiday on Tuesday for Anzac Day!
Anyway, that is my update and I will write again soon.
Little John..it is good that you are home! Praise the Lord!
Bless you all,
Love Charisse
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Tuesday, April 18, 2006 1:33 AM CDT
Hello All,
I hope you all had a very Happy Easter! I did. In fact I am amazed that I have had such a good Easter cause I have had a bad infusion reaction since last Friday - a week a go.
So, on Good Friday we went to church. My dad and mum are actually the Senior Pastors of my church. My church is an AOG (Assemblies of God) church and it is mainly black African. It is a mixture of different African backgrounds and Australian background as well....multicultural. It is a cool church and I love it. Ps Ralph Legge (my dad) spoke on the 5 supernatural things that happened in the 3 hours that Jesus was on the cross. It was an excellent sermon and very inspirational. Thanks dad...it really got me thinking about the authority that was shown on the cross...about the miracle that Jesus did.....about the Victory that we have when we chose Jesus to be our personal Lord and Saviour in our lives. We had communion and that felt extremely significant after the sermon. After that Alan, Isaac and I came home and had Hot Cross Buns.....hehe...for those of you who have never heard of Hot Cross Buns...they are a sweet yeast bun that has the symbol of a cross on top....not icing...something else....symbol of the cross Jesus hung on kind of....they are great and here in Australia..they are a tradition at Easter time!
That night we had a BBQ with mum, dad, Liesl and Tim (my sister and her husband)...it was also dad's birthday on Good Friday...Happy Birthday dad....you have been the best dad ever and God knew what He was doing when he gave me you as my dad! I love you.
Saturday we just relaxed and I slept til 12 noon! Yep, I was still struggling with the infusion reaction. It has been awful this time! In fact I have had tears over the pain I have been in. My haematologist tells me that it is like "meningistis" without the infection...so inflammation and all with the brain but no infection....I have splitting headaches that none of my pain relief...even the big pain relief...it won't get rid of it. My neck is so stiff and sore and my whole body...well....I am in pain. I am amazed that I got to church on Good Friday and on Easter Sunday. I have now had this type of pain for 7 days. It is bad and even now as I write...my poor eyes are so affected...but no one would know I feel this bad by just looking at me. So my haematologist thinks I am through the worst of it...but if it does continue then we can give me high doses of steroids for a couple of days to stop the inflammation. So I can say I will be calling him soon if it doesn't settle down some time soon this week. So please pray that this goes! It has been hard to do things feeling this way.
Praise God for His grace and mercy though! I still got to church on Easter Sunday! Praise the Lord that Jesus is alive! HA....we got Isaac the "Jesus" movie for children and he sits and watches the whole thing....he asks questions all the way through...what a sweetie.
Sunday was good. The children's choir sang a beautiful song, the sermon was inspirational and the worship was great. We also did an egg hunt for Isaac in the lounge room and it was so sweet to watch him be so excited!
Yesterday was a grim day! Ha...Easter Monday...a public holiday. We made plans to go to a wild life reserve with friends and family. It rained all day and we still went....hahahaha...you should have seen us having a picnic in some shelter while the rain poured down....we took one short walk around the place and went home...at least Isaac got to see the big cats.
This week....I was supposed to have my flu shot but I am waiting until this reaction goes away.
On Friday is my "meeting" with the transplantor here in Adelaide. Just to meet him and get some more results. I am very nervous about this. So please keep me in prayer. This is just one of our steps in everything going on so far.
Then Monday next week I see my haematologist again.
Alright...I have a very big headache and need to go.
Love you all,
Charisse
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Saturday, April 8, 2006 7:04 AM CDT
Hello Everyone,
despite the situation with the marrow...life does go on. I have days when I feel depressed and struggle to do anything and then I have days when the "marrow issues" means nothing to me and I look at my beautiful boy and my darling husband and just enjoy life. I can tell you that "it is well with my soul"....I love the Lord Jesus even more than I ever have before. He is my strength and my love and my peace. I still know that He is bigger than FA....."It seems like, but it is not"....a line I will never forget from the Christian Conference I went to. The Nigerian Pastor preached about difficult circumstances....when it seems like you are in a very difficult situation and you don't think it is going to end well.....God turns it around and uses it for good....so what it seems to be for us.....isn't really because God is in control...hmm...don't know what you all think about that...but I have had that line and sermon engrafted in my heart and mind since then. It really impacted me. I will keep allowing God to teach me...and He is gracious to me when I cry and feel weak...for it is then that He makes me strong....God is amazing in all that He does...His ways we will never understand...but I know that I can trust Him no matter how I feel about myself or the situation...I give all the praise to the Lord...to Jesus Christ...Easter is coming up...a time when we remember the great sacrifice that Jesus made on the cross...by taking all our sins and giving us the opportunity to repent and ask Jesus into our lives...making the way for us to have a close relationship with Jesus/God....I could never live one day without this close relationship I have with Jesus.
So what else has been happening? You know that breast infection I had ages ago...it all started 12 months ago after my son bit me while having some intimate son time (he was only 2 years)...and I got mastitis and it lasted heaps long and had several courses of antibiotics and antifungal and so on. Well it has been getting worse and worse...I have had pain down my arm and up my neck and all sorts of areas on the breast....I found a lump and had an ultrasound....and eventually I went to a breast surgeon this week. She did a thorough exam which I didn't enjoy cause I am always so anxious....but when she touched the spot where the lump was...I almost jumped through the roof! Ouch!!! I was in so much pain....well the ultrasound showed definite calcification caused by necrotic tisse from bad mastitis 12 months ago...the lump is calcification....thank the Lord! I have been SO worried about this.....believe it or not I have actually been more worried that the blast count for the moment...but I feel much better now. So I need to start laser therapy to break up this lump and open the prostaglandins of the breast and heal the breast and then ....NO PAIN!...What a relief after 12 months of pain...surgery should not be needed. Also I am starting Evening Primrose Oil which is good for breast pain. So that is that.
On Friday just gone I had another IVIG infusion. My last levels showed normal levels and if it keeps this up I can stop. I am dealing with another reaction this weekend that I don't like....but I will be ok.
Despite the reaction Isaac had a birthday party to go to and I was able to get there.....Alan drove and I just had to sit there but it is always a joy to watch your 3 year old have so much fun with other kids.....SIGH....I really want to have another baby. I want Isaac to have a brother or sister. I have not given up on these dreams. God knows my heart.
I am waiting for more test results...more bone marrow and more bloods......
Here comes the scary part....I am meeting the transplantor for the first time in 1 week and a half....it is just a meeting...nothing else and getting some more results that we have been waiting on...I am scared to death! Ha...another doctor to meet and I feel vulnerable. I should not need to be scared because he won't do anything to me....but I feel frightened...but because of what God told us a couple of weeks ago at the conference...well we are still waiting on Him and taking things slow....and God directly spoke...I mean directly...and you cannot go against God no matter what you think or do...my loyalty and love is for Him...there is no one else in the world I trust...but I need to meet this guy and try and not faint or collapse...he won't hurt me...I am afraid of that...I am afraid he will violate me and hurt me. But Alan will be with me and he is nice apparently. This is a milestone for me! Please ...FA community I need your support and love as I go through this journey...and I thank you for all the support you have been giving ...but it is so important to me...I love you all so much.
So what else? Isaac's paediatrician is so supportive and is looking after me ...I will be catching up for a counselling session with him this week and my GP as well...and Dr Ben..my haematologist...he really cares...I have great doctors...I am really blessed ...they are doing what is right for me and also encouraging me in my faith in God...they tell me that Spiritual things are sometimes more important than medical things and doctors need to remember this sometimes before they get ahead of themselves. This is a blessing when the medical folk acknowledge that there is a greater power than themselves that they answer to and I feel blessed I have these doctors.
I want to take some time to thank some VERY special friends.
Teresa, Tyler and Emma....you guys go beyong the call of duty to help me emotionally and as friends through this rough journey. We love you guys so much and pray for you all the time. Please know you are so special.
Donna, you are a woman of great beauty...you go through so much but still seem to shine in every conversation we have...continuing to encourage me in the ways of the Lord and yet giving me that balance of advice and help physically when I need it. I love you dearly...you have a special place in my heart.
Joanne Ho...we talk almost every night on Instant message and I love your friendship.....I look forward to it everynight ...you are also an amazing woman who has blessed my life and I pray for you so much.
Joan, the talks we have mean so much to me and your unconditional love...thank you.
Judy and Little John. you guys show so much love and encouragement to me....and I am glad Little John is doing well. The Lord has kept his hand on him. I love our friendship. You are a blessing.
Well, that is all for tonight..there are more people I can thanks....like John Hanna..who is a friend who just accepts me and I can talk to ...thank you.
Becca, thank you for your love and care and helping me work through things and always being there for me not matter what.
I love many of you and could go on and on..but this email is so long already.....
Oh Kristin, you have played a major parat in my life by trying to understand my anxiety and encouraging me to feel confident about myself..offering your friendship and love and accepting me for who I am ....
Thank you to all the FA families and prayer bears...Krisstina...you touch me with your warmth and lovely friendship...I love you.
Well, now I am tired...but thank you for reading my journal and please stop by in my guestbook ..it really helps me feel encouraged.
Lots of love,
Charisse
Good Evening!
Just thought I would give a quick update.
Saw my haematologist on Monday just gone. I was a little stressed at this appointment...I think just winding down from the appointment with the transplantor. Nothing new on my blast count or other counts.....I still Praise God that the blast count is down to 6% from 14%...but know there is a long way to go yet in working through all of this.
One thing though...even though we don't know if we will go ahead with transplant....I now do have a unrelated matched donor who would be ready in 4 weeks time. However, we have not decided on anything and are waiting for God to guide us further.
Unfortunately I had that nasty reaction with IVIG infusion last time so my next infusion in one week has been delayed for another 3 weeks. It has taken me a long while to recover so if it happens again this time...they think admitting me and giving me appropriate pain relief will help....also....changing my IVIG product to one that may not affect me in this horrible way...I had what they call "aseptic mennigitis"...it is not an infection but nasty inflammation of the brain. It was not nice.
Today Alan, Isaac and I went to Marialta Falls. We had a picnic lunch and walked to the one of the waterfalls. Isaac did very well because he walked the whole way...was carried half way back...but he thoroughly loved the outing. I think we were walking for 1.5 hours! It was beautiful and made me feel so refreshed! Now, haha...my legs are SO sore!
So that would be all I think.
Bless you all,
Love Charisse
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Sunday, April 23, 2006 5:25 AM CDT
Hello All,
I have great news! My blast count is down to 6%!!!!! YES! I know this is still not under 5%...but it is sure a LOT better than 14%. At the beginning of the year...well in February I had my bone marrow biopsy/aspiration and it showed a blast count of 13%....I had a second biopsy and aspiration in March to confirm it and it came back at 14%. To be honest I was feeling absolutely terrified about this whole pre-leukaemia thing. Oh, I still am quite scared about this. We have been on such a journey with FA and with our faith in Jesus...believing that one day Jesus will heal me completely...not because we made that up but because we honestly know that God spoke to us about it a long time ago. I have been waiting on God. A transplant was never a decision for us because of certain things and because of what we believed God had planned for us...then we got the high blast count and I didn't know what to do....I was terrified...and we have been doing bone marrow matching and planning in the background for transplant. But it is so hard to plan for a transplant when my whole being does not feel it is right for me...and I don't feel one ounce of peace about it(even though medically I need it). We have been praying and praying for breakthrough...for God to show us the way and if you remember we went to a Christian Conferencec a few weeks ago and God spoke to me powerfully there. I was so depressed at that meeting because of the circumstances...so afraid....and I have to be honest....because of certain issues...transplant has never been recomended for me and emotionally I just have had so much trouble handling it all. At this meeting God reassured me that it is ok to be afraid and that everything is under control.
Anyway, the transplant team decided to take the same sample again ( not a new one) and re-check it....and it came out at 6% and they are pretty certain with this result. It is not a new sample...it is the old....and I know people could try and explain why things are different....I myself, being a nurse, know that you have human error and all sorts of things.....but 6% is very different to 14% and I am very pleased with that. I still have lots of decisions to make....FA is still here........I still have to look at transplant in the background while waiting on God...but God is showing me the way and these results are a sign from God...it is God who has done this....there has been a LOT of prayer...you would not know how full on it has been. Praise the Lord.....
So, yes, I met the transplantor for the first time on Friday. I didn't know these results then...but I was very scared. I don't handle meeting doctors very well because of things that have happened in the past with them...causing post traumatic stress...I won't go into it. I had prepared myself for this meeting for ages....and what do I do...I go completely quiet. I was so nervous and so anxious that I ended up in complete pain. I couldn't bring myself to even face the transplantor in the eye and I couldn't get my mouth moving and my brain went completely dead. Alan had to do all the talking for me. Praise the Lord I didn't faint...but the whole time I was petrified of this guy who was actually quite nice I think...(from what I saw through my anxiety). He didn't try and touch me or do anything....despite him keeping his distance I felt very traumatised over the whole thing and very threatened! I really have difficulties with new doctors....especially talking about transplant!
I was just wanting to get my repeat blast count and I was scared that he was going to say it was 18% or something (even though I already had the results to this slide at 14%)...my mind played so many tricks I was just so scared. Finally Alan said, "what are the results? Charisse is frightened that they are worse than what she already has"...and I heard him say, "well she shouldn't be"...and then I heard, "they are 6%"...of course...I couldn't believe how they had suddenly changed from 14 to 6%. I know that for FA.....any type of blast count is dangerous and chromosome changes can already make things complicated...but I hope someone appreciates the fact that a lower blast count is less complicated.....I did smile once or twice at the guy when I managed to but left totally in a blur.....
Anyway, so that is my news.
Also, I ended up having to have 3 days of higher doses of prednisolone to get rid of the brain inflammation that I had from my IVIG reaction. The headache is still in my right eye and temple.....but heaps better now. Praise the Lord.
The calcified lump in my breast that we were supposed to be doing laser therapy had to be put on hold as we just investigate the slight risk that laser therapy can have on FA and chromosome breakage...just checking...but the evening primorose oil that I am taking for the pain seems to help a bit...it apparently starts working better after being on this for 6 weeks to 3 months.
Tomorrow, Monday...I have a regular haematology/oncology appointment.
Otherwise it should be an eventful week with a public holiday on Tuesday for Anzac Day!
Anyway, that is my update and I will write again soon.
Little John..it is good that you are home! Praise the Lord!
Bless you all,
Love Charisse
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Tuesday, April 18, 2006 1:33 AM CDT
Hello All,
I hope you all had a very Happy Easter! I did. In fact I am amazed that I have had such a good Easter cause I have had a bad infusion reaction since last Friday - a week a go.
So, on Good Friday we went to church. My dad and mum are actually the Senior Pastors of my church. My church is an AOG (Assemblies of God) church and it is mainly black African. It is a mixture of different African backgrounds and Australian background as well....multicultural. It is a cool church and I love it. Ps Ralph Legge (my dad) spoke on the 5 supernatural things that happened in the 3 hours that Jesus was on the cross. It was an excellent sermon and very inspirational. Thanks dad...it really got me thinking about the authority that was shown on the cross...about the miracle that Jesus did.....about the Victory that we have when we chose Jesus to be our personal Lord and Saviour in our lives. We had communion and that felt extremely significant after the sermon. After that Alan, Isaac and I came home and had Hot Cross Buns.....hehe...for those of you who have never heard of Hot Cross Buns...they are a sweet yeast bun that has the symbol of a cross on top....not icing...something else....symbol of the cross Jesus hung on kind of....they are great and here in Australia..they are a tradition at Easter time!
That night we had a BBQ with mum, dad, Liesl and Tim (my sister and her husband)...it was also dad's birthday on Good Friday...Happy Birthday dad....you have been the best dad ever and God knew what He was doing when he gave me you as my dad! I love you.
Saturday we just relaxed and I slept til 12 noon! Yep, I was still struggling with the infusion reaction. It has been awful this time! In fact I have had tears over the pain I have been in. My haematologist tells me that it is like "meningistis" without the infection...so inflammation and all with the brain but no infection....I have splitting headaches that none of my pain relief...even the big pain relief...it won't get rid of it. My neck is so stiff and sore and my whole body...well....I am in pain. I am amazed that I got to church on Good Friday and on Easter Sunday. I have now had this type of pain for 7 days. It is bad and even now as I write...my poor eyes are so affected...but no one would know I feel this bad by just looking at me. So my haematologist thinks I am through the worst of it...but if it does continue then we can give me high doses of steroids for a couple of days to stop the inflammation. So I can say I will be calling him soon if it doesn't settle down some time soon this week. So please pray that this goes! It has been hard to do things feeling this way.
Praise God for His grace and mercy though! I still got to church on Easter Sunday! Praise the Lord that Jesus is alive! HA....we got Isaac the "Jesus" movie for children and he sits and watches the whole thing....he asks questions all the way through...what a sweetie.
Sunday was good. The children's choir sang a beautiful song, the sermon was inspirational and the worship was great. We also did an egg hunt for Isaac in the lounge room and it was so sweet to watch him be so excited!
Yesterday was a grim day! Ha...Easter Monday...a public holiday. We made plans to go to a wild life reserve with friends and family. It rained all day and we still went....hahahaha...you should have seen us having a picnic in some shelter while the rain poured down....we took one short walk around the place and went home...at least Isaac got to see the big cats.
This week....I was supposed to have my flu shot but I am waiting until this reaction goes away.
On Friday is my "meeting" with the transplantor here in Adelaide. Just to meet him and get some more results. I am very nervous about this. So please keep me in prayer. This is just one of our steps in everything going on so far.
Then Monday next week I see my haematologist again.
Alright...I have a very big headache and need to go.
Love you all,
Charisse
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Saturday, April 8, 2006 7:04 AM CDT
Hello Everyone,
despite the situation with the marrow...life does go on. I have days when I feel depressed and struggle to do anything and then I have days when the "marrow issues" means nothing to me and I look at my beautiful boy and my darling husband and just enjoy life. I can tell you that "it is well with my soul"....I love the Lord Jesus even more than I ever have before. He is my strength and my love and my peace. I still know that He is bigger than FA....."It seems like, but it is not"....a line I will never forget from the Christian Conference I went to. The Nigerian Pastor preached about difficult circumstances....when it seems like you are in a very difficult situation and you don't think it is going to end well.....God turns it around and uses it for good....so what it seems to be for us.....isn't really because God is in control...hmm...don't know what you all think about that...but I have had that line and sermon engrafted in my heart and mind since then. It really impacted me. I will keep allowing God to teach me...and He is gracious to me when I cry and feel weak...for it is then that He makes me strong....God is amazing in all that He does...His ways we will never understand...but I know that I can trust Him no matter how I feel about myself or the situation...I give all the praise to the Lord...to Jesus Christ...Easter is coming up...a time when we remember the great sacrifice that Jesus made on the cross...by taking all our sins and giving us the opportunity to repent and ask Jesus into our lives...making the way for us to have a close relationship with Jesus/God....I could never live one day without this close relationship I have with Jesus.
So what else has been happening? You know that breast infection I had ages ago...it all started 12 months ago after my son bit me while having some intimate son time (he was only 2 years)...and I got mastitis and it lasted heaps long and had several courses of antibiotics and antifungal and so on. Well it has been getting worse and worse...I have had pain down my arm and up my neck and all sorts of areas on the breast....I found a lump and had an ultrasound....and eventually I went to a breast surgeon this week. She did a thorough exam which I didn't enjoy cause I am always so anxious....but when she touched the spot where the lump was...I almost jumped through the roof! Ouch!!! I was in so much pain....well the ultrasound showed definite calcification caused by necrotic tisse from bad mastitis 12 months ago...the lump is calcification....thank the Lord! I have been SO worried about this.....believe it or not I have actually been more worried that the blast count for the moment...but I feel much better now. So I need to start laser therapy to break up this lump and open the prostaglandins of the breast and heal the breast and then ....NO PAIN!...What a relief after 12 months of pain...surgery should not be needed. Also I am starting Evening Primrose Oil which is good for breast pain. So that is that.
On Friday just gone I had another IVIG infusion. My last levels showed normal levels and if it keeps this up I can stop. I am dealing with another reaction this weekend that I don't like....but I will be ok.
Despite the reaction Isaac had a birthday party to go to and I was able to get there.....Alan drove and I just had to sit there but it is always a joy to watch your 3 year old have so much fun with other kids.....SIGH....I really want to have another baby. I want Isaac to have a brother or sister. I have not given up on these dreams. God knows my heart.
I am waiting for more test results...more bone marrow and more bloods......
Here comes the scary part....I am meeting the transplantor for the first time in 1 week and a half....it is just a meeting...nothing else and getting some more results that we have been waiting on...I am scared to death! Ha...another doctor to meet and I feel vulnerable. I should not need to be scared because he won't do anything to me....but I feel frightened...but because of what God told us a couple of weeks ago at the conference...well we are still waiting on Him and taking things slow....and God directly spoke...I mean directly...and you cannot go against God no matter what you think or do...my loyalty and love is for Him...there is no one else in the world I trust...but I need to meet this guy and try and not faint or collapse...he won't hurt me...I am afraid of that...I am afraid he will violate me and hurt me. But Alan will be with me and he is nice apparently. This is a milestone for me! Please ...FA community I need your support and love as I go through this journey...and I thank you for all the support you have been giving ...but it is so important to me...I love you all so much.
So what else? Isaac's paediatrician is so supportive and is looking after me ...I will be catching up for a counselling session with him this week and my GP as well...and Dr Ben..my haematologist...he really cares...I have great doctors...I am really blessed ...they are doing what is right for me and also encouraging me in my faith in God...they tell me that Spiritual things are sometimes more important than medical things and doctors need to remember this sometimes before they get ahead of themselves. This is a blessing when the medical folk acknowledge that there is a greater power than themselves that they answer to and I feel blessed I have these doctors.
I want to take some time to thank some VERY special friends.
Teresa, Tyler and Emma....you guys go beyong the call of duty to help me emotionally and as friends through this rough journey. We love you guys so much and pray for you all the time. Please know you are so special.
Donna, you are a woman of great beauty...you go through so much but still seem to shine in every conversation we have...continuing to encourage me in the ways of the Lord and yet giving me that balance of advice and help physically when I need it. I love you dearly...you have a special place in my heart.
Joanne Ho...we talk almost every night on Instant message and I love your friendship.....I look forward to it everynight ...you are also an amazing woman who has blessed my life and I pray for you so much.
Joan, the talks we have mean so much to me and your unconditional love...thank you.
Judy and Little John. you guys show so much love and encouragement to me....and I am glad Little John is doing well. The Lord has kept his hand on him. I love our friendship. You are a blessing.
Well, that is all for tonight..there are more people I can thanks....like John Hanna..who is a friend who just accepts me and I can talk to ...thank you.
Becca, thank you for your love and care and helping me work through things and always being there for me not matter what.
I love many of you and could go on and on..but this email is so long already.....
Oh Kristin, you have played a major parat in my life by trying to understand my anxiety and encouraging me to feel confident about myself..offering your friendship and love and accepting me for who I am ....
Thank you to all the FA families and prayer bears...Krisstina...you touch me with your warmth and lovely friendship...I love you.
Well, now I am tired...but thank you for reading my journal and please stop by in my guestbook ..it really helps me feel encouraged.
Lots of love,
Charisse
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