Tuesday, December 27, 2005 1:21 AM CST
***NEW PHOTOS FROM CHRISTMAS***
***UPDATE***
1st January 2006
Well, good morning everyone! Happy New Year!!! It is already the New Year here in Australia. I am going to leave the update on below because I only just wrote that a couple of days ago...so catch up with everything that has been happening.
So what did we do for New Year? Alan, Isaac and I attend an AOG church which is about 95 to 98lack African. It is a great church and it is tradition that we have a celebration service/party on New Year's Eve. There is prayer, worship, dancing, items, choirs, food, testimonies...and then when we count down to midnight...and then it is the New Year...the Africans go wild with their African music and dancing. This is all the tribal type music. And they sure know how to dance. I was surprised that Isaac did not fall asleep but stayed by and joined in the dancing as Isaac and I joined a congo line and danced around the church. The food was good, the company was great and we got home around 2am. Got to sleep late. However, the Africans often dance til something like 4 am in the morning. Needless to say that I am tired this morning even though I slept til 1115am. Isaac slept in as well and Alan...but not nearly as long as me.
So it is now 2006 and we look forward to what God has in store for us this year. Hope you all have a Happy New Year!
Love Charisse
PS. Please also read below. It is only a new update
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Good Afternoon Everyone,
First of all...just before Christmas on the 19th December...Alan and I celebrated our 7th year wedding anniversary. I was only 20 when I married Alan and he was 21 years old. Praise the Lord that we are still together 7 years later. Praise the Lord that I am still alive to this day. We have a wonderful marriage and I love Alan very much. Thank you, Alan, for 7 wonderful years of marriage. I love you.
Hope you all had a wonderful Christmas!!!! We did and we are still having a great time. Alan is on holidays until just after New Years and it has been great having him home for once!
We have had an eventful Christmas...on Thursday last week we went as a family to a little Town called Lobethal. This town has the majority of the houses all lit up with fairy lights in different designs and stuff on the houses and in their front yards and in the windows. It is so Christmasy and beautiful and we thought that Isaac would appreciate the lights this year. They also have a live Nativity Play with real camels, sheep, goats, a real baby and people and a choir and music....we sat and watched that as well. Many times during the night I sighed and looked at Alan and said that I was in Heaven. It was so nice to ignore everything else and appreciate what Christmas is....appreciate Jesus for who He is and appreciate my family. I will have some pictures in the picture section of Lobethal.
Then on Christmas Eve we attended our African church for a service. I sang an item about Jesus and there was a Naticity play done by the children and Christmas carols...it was lovely.
Then when we got home, Isaac went to sleep and we put the presents out under the tree. When Isaac woke the next morning he was so excited to see that Santa had come. We have also shared the real meaning of Christmas with Isaac. We want him to know about Jesus.
He opened his presents and was so animated and excited. He got a wooden microwave, fake food and a doctor's bag....from family members...more cooking utensils and train sets and you name it...can you guess that Isaac likes cooking?
Alan and I enjoyed opening our gifts as well. We had lunch with Alan's family and dinner with my family. it was a busy day and we got home just after midnight.
The days after Christmas have been spent tidying up and relaxing. Isaac has been playing non-stop with his new toys and his train set...which is Thomas the Tank Engine...has had real usage.
Tomorrow we plan to go to Monarto Zoo....it is a drive through zoo where the animals are in their own habitats and you drive through into the enclosure with them...they have cheetahs and all sorts of African animals..I will post the photos after tomorrow.
Then tomorrow night Alan and I are going to go and see "The Lion The Witch and the Wardrobe"....a marvellous book and film that basically is about Jesus and the sacrifice He ultimately made by dying for us all and raising from the dead again....except that He is represented by a lion in this film...it is a magnificent book and I am excited to see what the film is like.
SO check out the photo album as I am putting new photos in there tonight.
Bless you and catch up soon. Have a great New Year!!!!
Love Charisse
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Monday, December 19, 2005 5:28 AM CST
Merry Christmas Everyone!
I am feeling heaps better. Although I had my infusion on the weekend and I am still feeling the effects of my reaction. That should be over by the weekend and Christmas time! My white cell count has now come up again since the flu.....I always long for better counts in the long run anyway..sinc they have been fluctuating quite a bit lately...however, praise the Lord that my white cell count in up - no wonder I am feeling better and more energised.
I have completed all my Christmas shopping and feel excited about Christmas day. Isaac is 3 years old this year and already has an expectation of Christmas. Last year he didn't really know what was going on...but this year...he seems so excited, thus making me feel the spirit of Christmas more and I feel like an excited child. It is gonna be good this year.
I have a bone marrow biopsy booked for January some time...yuck and I have an ENT appointment on the 30th December...does anything ever stop? No...not really....oh well...commit it to the Lord.
My nanny is working out so well. It is good to have the house cleaned for me on a Thursday....she does it so well, she cares for Isaac well when I am asleep...she helps out when I am awake, she gives me time out with Isaac.....and she is great company for me as well...we talk like close friends....obviously we are not close friends since I have only met her twice...but she is so easy to chat to and has bought FA bands off me and been real interested in knowing more about FA.
Well, I need to get to bed. I am trying to save my energy for Christmas day. This next year will be an interesting one. Some exciting things are gonna happen I am sure. With Jesus in control, life is always exciting and full of expectation.
God bless you all and remember that Christmas is a beautiful time of giving...the ultimate gift that was given for us human beings was Jesus....Praise Jesus for His faithfulness, love and peace all year round.
Lots of love,
Charisse
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Tuesday, December 13, 2005 11:38 PM CST
Hello All,
don't mind me but I found out more about my inside female parts the other day and I wanted to share with you all about it.
As most of you know I have a son, Isaac who was born at 27 weeks gestation and weighed 950 grams ( 2 pound 2 ounces)...he was in hospital for 3 months and now he is a healthy 3 year old boy.
I just want to publically praise God for the miracle He has done for me. I knew that I had an abnormal cervix after the birth because they did exploratory surgery on me to see why I had Isaac so premature.
I didn't realise until yesterday the extent of the abnormality when I really had it explained to me properly. I was under the impression that it was in the wrong place....my cervix and shaped wrong and so it was incompetent and couldn't hold Isaac in properly.
Excuse me for being graphic in explaining...may be this will also help mothers and fathers with female FA patients in relation to this whole gynae area and having babies.
A normal cervix comes down into the vaginal shaft usually....and that is where they do pap smears and tie stitches for incompetent cervixes......well my cervix doesn't enter the vaginal region at all. There is no bulk to my cervix...it is flat against the top of the vaginal wall (inside I am talking about -- going up towards the womb).....I have a flat cervix which has NO length or any kind of bulk to it at all......but there is a cervix..this might be confusing and I don't know how to explain it properly via computer.
Anyway.......I could show you with a diagram...hehe
so...since it is flat.....there is nothing to hold the baby in and they told me that Isaac would usually come at 20 or 22 weeks gestation and when he did come...that is why he actually fell out without laboring - and that it is a pure mircale of God that he survived long enough to be born at 27 weeks......and then to be a normal little boy! He is my miracle.
As many of you know I am a born again Christian and I give all my praise to Jesus....He gave me Isaac when I had no idea that I cannot hold a baby, physically past 20 to 22 weeks. So Isaac is my miracle.
Also, because of this FA abnormality......they were trying to do pap smears on me for ages and couldn't see a cervix or reach it...they had no idea what they were doing.....now we know..........well we found out after Isaac's birth.....but I have pap smears done under a general anaesthetic so they can get to my SPECIAL cervix. And I prefer to call it special rather than abnormal.
So any FA ladies or girls....if you are having trouble in this area...there could be an anatomical problem and it is very helpful to find out. Finding out about all this has helped me with the female things.
Bless you all and have a safe week....I hope I didn't bore you all.
Love Charisse
(FA Adult - almost 28 years old - mum of Isaac 3 years)
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Tuesday, December 6, 2005 10:43 PM CST
Good afternoon,
well I am feeling much better than I have the last month or two. I still tire easily and have to pace myself heaps...but with making sure I have a good night's sleep and pacing myself during the week...I seem to be improving. Both grandparents help out a bit and Alan and I have decided that it is right for us to hire a nanny/house cleaner on Thursdays to help take the load off a bit. I get tired with my housework and then I get aggrivated and exhausted. The nanny is from in house care.....not just a nanny.....and she will help me with Isaac that day when I need to have a sleep in that morning. Basically she will be my helper in everything that day to ease the work load a bit, espeically the house work. The governement helps us with paying her which is good. The nanny will not restrict me to staying home that day. I am still allowed to go out with my friends to shop or swim...she will be entitled to come along with me and help me basically....just the one day....I do not have people helping me here every day unless I am sick...I need to be by myself some days and just with Isaac otherwise I go crazy! Once again thank you to both Alan and my parents for helping us while I have been sick. And I will still enjoy the days that you come to help. Mum I love you and thank you for all the chats and "mother time" we have on Tuesdays. I want to say that yesterday I thoroughly enjoyed spending the day with you talking about Jesus, about the future and hope and then doing our crazy Christmas shopping. Thanks for that. I love you very much.
Anyway, Christmas is coming up...and obviously mum and I attempted the Christmas shopping yesterday and I think we both did very well. Isaac was very patient in his stroller. We did let him run around at times. I got most of my shopping done and felt very pleased.
I have SO many appointments!!! It is crazy. I counted them. I have 7 appointments starting from next week and going into the new year! Boy, talk about trying to fit it all in....these are just surveillance and check ups.....my haematologist cancelled Monday just gone...so I have that Monday, then I have an ENT appointment, my infusion, a liver appointment (gastroenterologist) and I go back to see my Gynae/Obst again .........by the way all my gynae surveillance was clear!
So it is busy and I initially felt a but stressed but I am gonna take it in my stride and be happy they are all over. Once they are over I actually feel like I can breathe and relax a bit better. I dislike appointments so having them spread out is sometimes overwhelming...close together is also overwhelming but I like getting it over and done with now that I am an adult.
That's all from me today so have a good rest of the week.
Love Charisse
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Friday, December 2, 2005 4:34 AM CST
Good Evening All,
it is Friday here in Australia and 9pm at night. I hope you all had a good week.
I have felt a lot stronger this week...Praise the Lord! I struggle so much emotionally when I feel physically lethargic and tired.
I am so proud of myself because I have done so much this week. A quick summary: I tidied the house and cleaned, did loads of washing on Monday, went Christmas shopping on Tuesday, attended a double session of kindergym with Isaac and friends on Wednesday, Thursday I did nothing literally except play with Isaac and today, Friday, we had Isaac's annual Premie Christmas Party from 1pm to 4pm. That is a lot for me when I am still feeling not quite "normal" within myself. I am definitely stronger but notice that I am not quite there yet...still a bit more strength to come back since the flu...it will come.
So today I went to Isaac's Premie Party which is put on and completely decked out by the Women's and children's hospital which is where Isaac was born 13 weeks early. Any baby born under the weight of 1000grams gets to attend this party every Christmas until they are 10 years old. Obviously this section is entirely different to the haematology section so not as threatening to me. The old part of the hospital is the part I struggle with. Anyway, the head neonatologist dresses up as Santa and they have a good time. Isaac LOVED his day. Nanna came as well. Unfortunately Alan couldn't make it to Isaac's special day. Isaac loved the lady bird ride even though he didn't want to get on it. He wanted to run around it like a train. He didn't want to look at Santa but some how Nanna managed to get a front on photo...well done Nanna! He loved the chips, the ice cream, having his hand painted instead of his face, playing with the football, making friends, seeing Humphrey B Bear. It was a good day. So I have put NEW photos in the photo section of our day and hope you like them.
What is left to update on. My mouth ulcers are almost all gone. The gums around the bottom front teeth are still red and swollen and sore but a lot better. Everywhere else has cleared up. My toe, well that is still going...once I was well they were going to start me on some anitbiotics that fight staph infections for 2 to 3 months. I have an appointment with my haematologist on Monday.
My parents went to see my haematologist for the first time last Monday. They have never met him before because I went to him as an adult not as a child. They were able to get to know him and have a chat with my permission....and they like him...so I am glad they had a good time.
Otherwise, that is it for me. Talk to you all later and have a good weekend.
Love Charisse
Saturday, December 31, 2005
Wednesday, November 30, 2005
November 2005 entries
Friday, November 25, 2005 5:27 PM CST
Happy Thanksgiving to All!,
good morning everyone! I hope you are all having a wonderful Thanksgiving. As you all know I live in Australia and we don't have thanksgiving in Australia because it is an American holiday. It is to do with American History and so I suppose it makes sense that America celebrates it and not Australia. However, it has been an honour to learn about the history behind Thanksgiving as many of my dear friends have explained and enlightened me on this...yes, before this year I have never been sure what Thanksgiving in America is all about. I have seen it on TV and my parents used to be in America for a while...so I knew I it from them...but it is only just this weekend that I have understood it properly. So thanks to all and I pray your holiday is great!
I am still getting better. I have still been lethargic. Simple things take my energy away. I have still been having people help me during the day so I can get the rest that is needed. Thanks to Denise and my mum for helping me...to the dads for understanding and a deep thanks to my husband for sacrificing time off work to care for me. To me that is a big thing and one that I am truly grateful for. Thank you. Alan, you are great with Isaac and a wonderful father and husband, dedicated to our cause and challenges that we always seem to face on this road of Fanconi Anaemia and life's road. We continue to trust in Jesus for a miracle and for guidance on this walk of faith. Please continue to pray that my strength gets greater and greater so I can have less help from people. It is frustrating to not be the "woman" of the house and need help, but it does teach me to be humble.
My white cell count was down with my last test. I have had a test since but I don't know the results yet. I may be starting a slightly higher dose of prednisolone to help boost the counts since my "flu" bout....and what a relief it will be to boost the neutriphils a bit so I can have a bit more strength and less mouth ulcers.
I still have some mouth ulcers. They have healed really well so far. The haematologist said that it would take 3 weeks from when I saw him and it has been about 2 weeks. They are very close to being all gone. My gums are still soft and red and bleed a bit. I still can feel pain but it is much improved. So I expect with another week and more rest, taking it easy....my mouth should be close to being better. Fanconi Anaemia patients are slow to heal but we get there.
My toe!!! My toe is a chronic infection and since my neutriphils have been low is continues to remain there. With the type of infection I have .....it needs 2 to 3 months of low dose antibiotics rather than a week of IV antibiotic. We are waiting for me to be a bit better before we start the type of antibiotics....the ones that fight staph infections...they give me some gastric problems and so we wanted to wait til I felt stronger before I endure this.
Otherwise, things are improving and I am starting to feel a lot more joy.
However the other night I had a bad night's sleep. I tossed and turned from 12am to 3am and then was awake until 4.50am....fell asleep, had a nightmare or 2 and woke at 5am scared stiff and was then awake until 6am. I didn't have much sleep at all. Even though I slept in, in the morning...it knocked me around that day. Luckily Alan stayed with me that day because I was exhausted and felt very unwell. I ended up going back to bed in the afternoon and sleeping. The next day I slept in until 1130am....I must have been so tired I think!
Well, once again...thanks to the two mums who have helped, the dads who have understood and my lovely husband who is always trying to do what is best for me. I love you.
Bless you all and have a great Thanksgiving.
Love Charisse
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Saturday, November 19, 2005 3:46 AM CST
Hello All,
first of all.....There are NEW PHOTOS AGAIN....Alan and I were reminising tonight about the "old days"! HA! I found some pictures of me at my 19th birthday and Alan and I were dating at the time. Alan and my engagement party and I added a picture at my bridal shower with my mum and I ...I was dressed in a toilet paper wedding gown created by my friends for me...pictures of my brother, Shannon, who also had FA and died in October 1994....he had a transplant that year. Shannon and I were really close and he was a terrific guy...always so happy! Also I have added some photos of Isaac when he was first born and also of him a lot younger than now. Most of you would know he just had his 3rd birthday on the 8th November...so to look back at his photos and remember is wonderful. He was born at 27 weeks gestation and weighed only 2 pound 2 (950 grams). Enjoy the photos...I think I look younger...obviously I am younger!
Anyway, update on me so far. I saw the haematologist this week and he expects that I will take a little longer to recover from this flu bug. I had it severely and I am still trying to build up my strength. The ulcers in my mouth are still bad but improving slowly and he expects them to linger around another 3 weeks considering how sick I have been and how my white cell count dropped from the illness...it should pick up again soon though.
I had my gynae surveillance this week and that went really well....everything looked clear with the coloposcopy and hysteroscopy and I am waiting for the pap smear results.
I had an IVIG infusion yesterday, had my usual reaction, stayed in hospital overnight and now I am home again....still feeling off...but with a positive attitude that I will improve. I know this infusion helps my immunity so I am grateful for it even though I never enjoy staying in hospital.
Well, I am going to go for a small walk to a house in our neighbourhood that has Christmas lights all over....with Isaac and Alan and then I am going to take care of myself again all night, get an early sleep.
Bless you all and will update again soon.
Love Charisse
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Friday, November 11, 2005 2:07 AM CST
Sunday 13th november
**UPDATE**
Well, as I said below..Isaac had his toddler party on Saturday. Below I talk about his family party. NOw I am going to tell you about his toddler party and I need to add some more pictures I think. There are pictures in the photo section of Isaac's parties. It went so well. I was so surprised at how well all the children held out for the party. Isaac was the oldest. All the others were about 2 1/2 years old. Isaac had 4 friends and that was busy enough for me. He opened presents and showed his friends his bike that he got earlier on in the week. They played parce the parcel. That was so cute. These toddlers wanted to keep ripping more than one wrap off and were so excited when they got a gift from it. They all danced on the wiggle's mat and a little African boy was the best "bouncer" so he got a prize. They rode around on their bikes and cars outside, went up and down the slippery slide, tried to catch the bubbles that Alan blew from the toy saxophone. They all loved the train cake that Alan made! Alan did a great job of the train and Isaac was so pleased with himself as the children sang "Happy Birthday"....the kids wanted to sing it twice and Isaac beamed as everyone cheered while he blew out the candle with help from daddy! What a day! The whole party went for about 4 hours and I can say that I was positively exhausted at the end of it. My mum and mother-in-law were there to help...and bless them and Alan...I have still been so lethargic...that they did a lot of the heavy work...thanks to both the mums and Alan. I think I did extremely well considering how unwell I have been. Anyway, so that is some of the excitment. Well, bless you all and have a good week.
Love Charisse
**END**
Good evening,
just a quick update. Isaac's party went so well. He was so cute opening his PRESENTS as he loudly and excitedly exclaimed. His face was comical...he loved his veggie tales DVD's and his new bike, his Bob the Builder torch, Wiggles mat, big tonker truck, book piano and so on....ha....not all from Alan and I....have to remember that there were gifts from Aunties and Uncles, and grandparents and all.....Isaac loved the family party and most of all he loved the BIRTHDAY CAKE!!!! He looked so cute as he stuffed the mud cake in his mouth and then said with a mouth full, "more cake please".....ha ...it was funny. If you read this and the pictures are not on my site yet...I am in the process of getting them on....so give me a little moment.
Also to update.....my dear old toe is still a bit red but looking better...nothing showed up on the x-ray and no arthritis or anything...bloods showed inflammation but that is normal for how red my toe has been....looks like it is getting better...so we are leaving it for now.
On the flu front....I have been "not feeling well". Oh I am much better than last week and my throat is still much better...but at late afternoon and early and late evening I still feel fluey.....I ache and shake and feel real bad. I need to feel well. it is starting to affect me emotionally now. And the last couple of days I have broken out in ulcers, literally, all over my gums ....causing ear pain, headaches, neck pain, gland pain....I feel miserable! My wbc count was only 1.2 which is low for me and neutriphils are at 0.7.....I actually was surprised that they were not lower considering how this flu has knocked me about and all the ulcers I have. I am still so lethargic....tomorrow is Isaac's toddler party and I am still having it. I would be so depressed if I missed it because I am sick...so I need to just pamper myself and take care of myself during it and get lots of sleep tonight. Please pray for me. Please pray that I will get well...I know I will feel better once my immunity is up again. I have an IVIG infusion in one week and that will help in the long run.
Also, think of me next week as I go for my gynae check up that us FA patients do....I have a pap smear, a coloposcopy and a hysteroscopy....pray that they go well. I have it under anaesthetic because they cannot get in there easily......I am a bit different. I have nothing wrong with me...this is just survelliance. Please keep me in prayer.
Love you all,
Charisse
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Monday, November 7, 2005 2:48 AM CST
Hey!
Thanks for the prayers...my throat is MUCH better...I have finished my antibiotics...the liquid stuff and my chest is heaps better as well....I still have a nagging cough but nothing to cough up ....so that is good. The doctor thinks the flu virus is out of my system but I am left with the recovery stage...and with this flu...I have found out that it can take up to 3 weeks for someone to recover from if they are NOT immunosuppressed! I still feel faint and get shaky and hot when I am walking around too much. My energy is very limited but I have managed to keep myself out of bed in the last 2 days...in the afternoon....and just be on the couch! YES!!!
Anyway, so I am hoping, with help, to improve daily...I ahve my mum coming here to help me with Isaac and she is basically caring for me while I haven't got much strength...then back to the usual routine. Thanks mum! Thanks also to Alan's mum who has been coming regularly as well. I appreciate it all!
Tomorrow is ISAAC'S BIRTHDAY!!! He will be THREE!!!! We will do presents at night when Alan is home from work and my family will have tea with us....we will have some snacks and a birthday cake and present opening....should be a relaxed night and I shouldn't have to exert too much energy at all. So Happy birhtday my dear son...you are a credit to your mum and dad!!! Bless you heaps!!!
On Saturday we are having a toddler party. It was planned before I got sick and I cannot cancel it...I will just have to take it easy. I will tell you about that later.
Love you all,
Charisse
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Thursday, November 3, 2005 7:06 PM CST
Hello,
as I said in the last update...I haven't been well. The flu is going around our state at the moment and it is not nice. I have had the flu for 7 days which is viral with a bacterial chest and throat infection. It has been so bad that my throat closed and I couldn't get any fluids or antibiotics down.....so they changed me to liquid antibiotics and I managed to sqeeze that down. My throat is less swollen now and I can actually eat with pain. I still have blocked ears and feel weak, faint and have fevers...however my glands are less swollen.
I am sorry to those who I have not been able to check your websites...I am exhausted and just need time to recover.
I thought that I had been lucky to miss out on this bug while over in America...my brother-in-law had the flu while I was gone and he was SO sick with it...doesn't just make immunosuppressed people really sick.
On Tuesday my son will turn 3 years old. When I am feeling better I will tell you all about it. I am praying that I will feel better by then.....4 sleeps to go.
Bless you all and bye,
Charisse
Happy Thanksgiving to All!,
good morning everyone! I hope you are all having a wonderful Thanksgiving. As you all know I live in Australia and we don't have thanksgiving in Australia because it is an American holiday. It is to do with American History and so I suppose it makes sense that America celebrates it and not Australia. However, it has been an honour to learn about the history behind Thanksgiving as many of my dear friends have explained and enlightened me on this...yes, before this year I have never been sure what Thanksgiving in America is all about. I have seen it on TV and my parents used to be in America for a while...so I knew I it from them...but it is only just this weekend that I have understood it properly. So thanks to all and I pray your holiday is great!
I am still getting better. I have still been lethargic. Simple things take my energy away. I have still been having people help me during the day so I can get the rest that is needed. Thanks to Denise and my mum for helping me...to the dads for understanding and a deep thanks to my husband for sacrificing time off work to care for me. To me that is a big thing and one that I am truly grateful for. Thank you. Alan, you are great with Isaac and a wonderful father and husband, dedicated to our cause and challenges that we always seem to face on this road of Fanconi Anaemia and life's road. We continue to trust in Jesus for a miracle and for guidance on this walk of faith. Please continue to pray that my strength gets greater and greater so I can have less help from people. It is frustrating to not be the "woman" of the house and need help, but it does teach me to be humble.
My white cell count was down with my last test. I have had a test since but I don't know the results yet. I may be starting a slightly higher dose of prednisolone to help boost the counts since my "flu" bout....and what a relief it will be to boost the neutriphils a bit so I can have a bit more strength and less mouth ulcers.
I still have some mouth ulcers. They have healed really well so far. The haematologist said that it would take 3 weeks from when I saw him and it has been about 2 weeks. They are very close to being all gone. My gums are still soft and red and bleed a bit. I still can feel pain but it is much improved. So I expect with another week and more rest, taking it easy....my mouth should be close to being better. Fanconi Anaemia patients are slow to heal but we get there.
My toe!!! My toe is a chronic infection and since my neutriphils have been low is continues to remain there. With the type of infection I have .....it needs 2 to 3 months of low dose antibiotics rather than a week of IV antibiotic. We are waiting for me to be a bit better before we start the type of antibiotics....the ones that fight staph infections...they give me some gastric problems and so we wanted to wait til I felt stronger before I endure this.
Otherwise, things are improving and I am starting to feel a lot more joy.
However the other night I had a bad night's sleep. I tossed and turned from 12am to 3am and then was awake until 4.50am....fell asleep, had a nightmare or 2 and woke at 5am scared stiff and was then awake until 6am. I didn't have much sleep at all. Even though I slept in, in the morning...it knocked me around that day. Luckily Alan stayed with me that day because I was exhausted and felt very unwell. I ended up going back to bed in the afternoon and sleeping. The next day I slept in until 1130am....I must have been so tired I think!
Well, once again...thanks to the two mums who have helped, the dads who have understood and my lovely husband who is always trying to do what is best for me. I love you.
Bless you all and have a great Thanksgiving.
Love Charisse
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Saturday, November 19, 2005 3:46 AM CST
Hello All,
first of all.....There are NEW PHOTOS AGAIN....Alan and I were reminising tonight about the "old days"! HA! I found some pictures of me at my 19th birthday and Alan and I were dating at the time. Alan and my engagement party and I added a picture at my bridal shower with my mum and I ...I was dressed in a toilet paper wedding gown created by my friends for me...pictures of my brother, Shannon, who also had FA and died in October 1994....he had a transplant that year. Shannon and I were really close and he was a terrific guy...always so happy! Also I have added some photos of Isaac when he was first born and also of him a lot younger than now. Most of you would know he just had his 3rd birthday on the 8th November...so to look back at his photos and remember is wonderful. He was born at 27 weeks gestation and weighed only 2 pound 2 (950 grams). Enjoy the photos...I think I look younger...obviously I am younger!
Anyway, update on me so far. I saw the haematologist this week and he expects that I will take a little longer to recover from this flu bug. I had it severely and I am still trying to build up my strength. The ulcers in my mouth are still bad but improving slowly and he expects them to linger around another 3 weeks considering how sick I have been and how my white cell count dropped from the illness...it should pick up again soon though.
I had my gynae surveillance this week and that went really well....everything looked clear with the coloposcopy and hysteroscopy and I am waiting for the pap smear results.
I had an IVIG infusion yesterday, had my usual reaction, stayed in hospital overnight and now I am home again....still feeling off...but with a positive attitude that I will improve. I know this infusion helps my immunity so I am grateful for it even though I never enjoy staying in hospital.
Well, I am going to go for a small walk to a house in our neighbourhood that has Christmas lights all over....with Isaac and Alan and then I am going to take care of myself again all night, get an early sleep.
Bless you all and will update again soon.
Love Charisse
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Friday, November 11, 2005 2:07 AM CST
Sunday 13th november
**UPDATE**
Well, as I said below..Isaac had his toddler party on Saturday. Below I talk about his family party. NOw I am going to tell you about his toddler party and I need to add some more pictures I think. There are pictures in the photo section of Isaac's parties. It went so well. I was so surprised at how well all the children held out for the party. Isaac was the oldest. All the others were about 2 1/2 years old. Isaac had 4 friends and that was busy enough for me. He opened presents and showed his friends his bike that he got earlier on in the week. They played parce the parcel. That was so cute. These toddlers wanted to keep ripping more than one wrap off and were so excited when they got a gift from it. They all danced on the wiggle's mat and a little African boy was the best "bouncer" so he got a prize. They rode around on their bikes and cars outside, went up and down the slippery slide, tried to catch the bubbles that Alan blew from the toy saxophone. They all loved the train cake that Alan made! Alan did a great job of the train and Isaac was so pleased with himself as the children sang "Happy Birthday"....the kids wanted to sing it twice and Isaac beamed as everyone cheered while he blew out the candle with help from daddy! What a day! The whole party went for about 4 hours and I can say that I was positively exhausted at the end of it. My mum and mother-in-law were there to help...and bless them and Alan...I have still been so lethargic...that they did a lot of the heavy work...thanks to both the mums and Alan. I think I did extremely well considering how unwell I have been. Anyway, so that is some of the excitment. Well, bless you all and have a good week.
Love Charisse
**END**
Good evening,
just a quick update. Isaac's party went so well. He was so cute opening his PRESENTS as he loudly and excitedly exclaimed. His face was comical...he loved his veggie tales DVD's and his new bike, his Bob the Builder torch, Wiggles mat, big tonker truck, book piano and so on....ha....not all from Alan and I....have to remember that there were gifts from Aunties and Uncles, and grandparents and all.....Isaac loved the family party and most of all he loved the BIRTHDAY CAKE!!!! He looked so cute as he stuffed the mud cake in his mouth and then said with a mouth full, "more cake please".....ha ...it was funny. If you read this and the pictures are not on my site yet...I am in the process of getting them on....so give me a little moment.
Also to update.....my dear old toe is still a bit red but looking better...nothing showed up on the x-ray and no arthritis or anything...bloods showed inflammation but that is normal for how red my toe has been....looks like it is getting better...so we are leaving it for now.
On the flu front....I have been "not feeling well". Oh I am much better than last week and my throat is still much better...but at late afternoon and early and late evening I still feel fluey.....I ache and shake and feel real bad. I need to feel well. it is starting to affect me emotionally now. And the last couple of days I have broken out in ulcers, literally, all over my gums ....causing ear pain, headaches, neck pain, gland pain....I feel miserable! My wbc count was only 1.2 which is low for me and neutriphils are at 0.7.....I actually was surprised that they were not lower considering how this flu has knocked me about and all the ulcers I have. I am still so lethargic....tomorrow is Isaac's toddler party and I am still having it. I would be so depressed if I missed it because I am sick...so I need to just pamper myself and take care of myself during it and get lots of sleep tonight. Please pray for me. Please pray that I will get well...I know I will feel better once my immunity is up again. I have an IVIG infusion in one week and that will help in the long run.
Also, think of me next week as I go for my gynae check up that us FA patients do....I have a pap smear, a coloposcopy and a hysteroscopy....pray that they go well. I have it under anaesthetic because they cannot get in there easily......I am a bit different. I have nothing wrong with me...this is just survelliance. Please keep me in prayer.
Love you all,
Charisse
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Monday, November 7, 2005 2:48 AM CST
Hey!
Thanks for the prayers...my throat is MUCH better...I have finished my antibiotics...the liquid stuff and my chest is heaps better as well....I still have a nagging cough but nothing to cough up ....so that is good. The doctor thinks the flu virus is out of my system but I am left with the recovery stage...and with this flu...I have found out that it can take up to 3 weeks for someone to recover from if they are NOT immunosuppressed! I still feel faint and get shaky and hot when I am walking around too much. My energy is very limited but I have managed to keep myself out of bed in the last 2 days...in the afternoon....and just be on the couch! YES!!!
Anyway, so I am hoping, with help, to improve daily...I ahve my mum coming here to help me with Isaac and she is basically caring for me while I haven't got much strength...then back to the usual routine. Thanks mum! Thanks also to Alan's mum who has been coming regularly as well. I appreciate it all!
Tomorrow is ISAAC'S BIRTHDAY!!! He will be THREE!!!! We will do presents at night when Alan is home from work and my family will have tea with us....we will have some snacks and a birthday cake and present opening....should be a relaxed night and I shouldn't have to exert too much energy at all. So Happy birhtday my dear son...you are a credit to your mum and dad!!! Bless you heaps!!!
On Saturday we are having a toddler party. It was planned before I got sick and I cannot cancel it...I will just have to take it easy. I will tell you about that later.
Love you all,
Charisse
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Thursday, November 3, 2005 7:06 PM CST
Hello,
as I said in the last update...I haven't been well. The flu is going around our state at the moment and it is not nice. I have had the flu for 7 days which is viral with a bacterial chest and throat infection. It has been so bad that my throat closed and I couldn't get any fluids or antibiotics down.....so they changed me to liquid antibiotics and I managed to sqeeze that down. My throat is less swollen now and I can actually eat with pain. I still have blocked ears and feel weak, faint and have fevers...however my glands are less swollen.
I am sorry to those who I have not been able to check your websites...I am exhausted and just need time to recover.
I thought that I had been lucky to miss out on this bug while over in America...my brother-in-law had the flu while I was gone and he was SO sick with it...doesn't just make immunosuppressed people really sick.
On Tuesday my son will turn 3 years old. When I am feeling better I will tell you all about it. I am praying that I will feel better by then.....4 sleeps to go.
Bless you all and bye,
Charisse
Monday, October 31, 2005
October 2005 entries
Friday, October 28, 2005 3:56 AM CDT
Hello Family and Friends,
well I hope that you all got to read my important update before this and if you haven't, please go to past journal entries and read it cause it will help you understand my direction with decision making and so forth.
Well, I told you about my past and recent chromosome changes and mentioned that both Alan and I believe that Jesus does not intend for us to go down the road of transplant yet. There has been much discussion with various doctors over this subject and for certain reasons we are going to wait. My blast count is normal under 5nd so far I have everything to live for. Transplant, for certain reasons is not the best option to me right now. And for sprirtual reasons, we strongly do not believe that NOW is the right time. If God changes that then we will look at that. However, I am finding a marrow donor since I actually don't have one. Just in case because Jesus doesn't want me to be unwise....and we feel that this is right. However, transplant is constantly on my mind....and all the emotions that come with FA are constantly in the back of my head.....but I have made decisions 11 years ago not to transplant because of certain reasons that I cannot explain...and I wasn't sure if with this recent change, whether that would change....however, it has not changed and I am praying that the Lord will give me many more years ---- I am believing for healing.
Anyway, when you have something like FA...you are constantly trying to beat battles spiritually and medically. Three years ago we had Isaac, our son and we have an outlook on life...that FA will not get in our way. Jesus has blessed us with a good life and will guide every step taken whether it ends up with a tranplant or not. Remember that Jesus is the head over our lives, not the medical world and that there have been amazing miracles performed by Jesus that the doctors cannot explain....why not with FA....YES!!! I am not disregarding that everything that is going on is not serious. Many of you know how serious I take all of this stuff...and how it affects me emotionally. Our eyes are open wide to the possiblities of what can happen to me with FA and my marrow and everything else that they talk about. However, we are trying not to let that affect our outlook or approach on life. Obviously FA plays a big part in our life, but we don't want it to rule us no matter what happens. That doesn't mean you make silly decisions...all decisions made are made after months and months of deep thought, discussions and consultations and prayer.
Alan and I long for another baby amongst all this and my doctor advices that we do all that now rather than wait...Reason being that if I ever needed to transplant, better to have the baby before than after, and do it while I am well....and I am well....we have been praying about this and feel it is the right direction. You may have questions, "but you have chromosome changes?" "what if you die"....well, yes, I have had chromsome changes for 11 years and I will continue to monitor them and my blast cell...if it goes up above 5..we will need to consider transplant......and I am not focusing on the death...however, I know the reality of FA like you do...and we have thought about that too.....if anything ever happened to me....we would like Isaac to have a sibling - so he can have support rather than be an only child. Alan and I have spoken in depth about all this....and we have gone through it with doctors and counsellors...you never make a decision without consulting everything...I did that even with Isaac.....I am going to live my life happily...and so is my family...so amongst threats and turmoil, there is joy and peace and love... my family, my doctors - they all support me and most of all...we feel what Jesus is telling us.....oh, I am not pregnant - I just wanted to share as an FA adult what issues you do deal with...it is way different to a child.
Now enough of all that deep thinking. Sometimes it makes my head hurt so much because I consider all this so much. My toe....I wrote that my toe was red and sore and has been for a number of weeks. The GP wanted to give me IV antibiotics and they thought it was cellulitis....but I went to Dr. Ben on Monday, my haematologist, and my toe actually has burritis...an infection of the pocket of fluid that lubricates the joint in the toe...that is why I can't move my toe. We are trying 3 weeks of oral antibiotics. I know that IV can be quicker, but for certrain issues we are tyring this first. I have had oral antibiotics for a total of 2 weeks now and my toe actually looks better. The swelling has come down a bit and it is less angry looking. However, Dr. Ben did say that I shouldn't be surprised if it flared up every now and then in the next couple of weeks because it was a very aggressive infection. If we don't get rid of it all, I suppose we can do IV. You see, this month I have dealt with so many feelings considering my brother's death (he had FA)....that I get very depressed in hospital, very depressed.....so we are trying to decrease that time. In Australia, we are very aware of the whole person. The emotional side is deemed just as important as the medical side. So sometimes when you may think "she should be in hospital or have IV"...there are reasons you may not know about as to why I am not. Why do I write and say this....may be this will help people understand what goes on in our brains as patients. Hope all I said doesn't sound judgemental because it is certainly not meant to be. I tend to write exactly how I speak. HA!
It is my brother's 11th year anniversary of his death tomorrow the 29th October....he died in 1994 after a transplant. I love him with all my heart.
To add to my toe, I actually have come down with a flu bug the last 2 days. HA!!! I actually get sick very rarely. But whenever I am really down emotionally, I seem to be more vulnerable. Also, we are trying to balance my IVIG infusions at the moment. They think I am getting too much of a peak with the infusion and then getting low over the 6 weeks too fast......so I will have a blood test to check my levels and they are thinking of decreasing the IgG, but doing it 4 weekly so I have a more even spread and therefore, less vulnerable to infection. Make sense? I know what I mean.....hehe.
Ok, well, that is certainly enough "update". I pray that you are all well and will update again soon.
Bless you all and love you,
Charisse
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Sunday, October 16, 2005 1:22 AM CDT
**New update**
Monday 24th October 2005
Good Morning,
I am going to leave the last update on here still for a while so I know that everyone has had a chance to read it and know what is happening with me.
Please keep me in prayer today. I have an appointment with my haematologist today at the Women's and children's Hospital with Dr Ben. I have been feeling nervous and a bit stressed about this all week...all last week...and I had a "not so good" weekend with depression and anxiety. There are a lot of issues I will be discussing in regards to my marrow.....also I just get uneasy cause it is where I grew up with Fanconi Anaemia..and where my brother died...and it has been 11 years since he died this Friday..so I feel a bit emotional.
Also I have had an infected toe for over a week and it isn't healing. It looks like cellulitis...and they wanted me to have IV antibiotic last week..hehe..but I have been holding out cause I didn't want to go to hospital cause I feel too emotional at the moment..so I have been praying the oral antibiotics will work...ha! My toe it STILL bright red and sore...hmmm..we will see what Dr. Ben has to say about it today.
Anyway, got to go.
Love Charisse
**End of update**
Dear Family and Friends,
As most of you know everyday I face the battle with Fanconi Anaemia, anxeity and depression. Well I am going to share with you something I have not shared before. Somthing that I have not shared because it has been a part of my life for a while and I never thought of sharing it with you guys. Then when something happened this year, it brought it to mind again. Then I felt reluctant to share because I felt like I would be judged by so many families and thought of badly. Some of you may not understand why I have made certain decisions and some of you may think I am stupid and not making the right decisions.....I don't know....it scares me to think of how I am viewed sometimes.....and I am being honest in saying that because that is how I feel. But if I share from my heart, may be you will all understand my position.
Here goes......for the last 10 to 11 years I have had chromosome changes in my marrow. I had my first chromosome changes about 11 years ago. It was a shock back then. We all know that research states that chromosome changes/clones are all likely to eventually lead to leukemia or MDS. Therefore, medical specialists often and most always reccomend a bone marrow transplant early on in the peace while you are well in order to have the best outcome with the bone marrow transplant.
We also know, through research, that chromosome changes/clones will not necessarily lead to leukemia unless the chromosome changes are accompanied with MDS or increased blast count. For those of you who are not aware, there is a certain percentage of dysplasia that deems it to be called MDS and a certain percentage of blast cells that make you leukemic or normal or in the grey area.
Now I have explained this.....so my cytogenetics results 11 years ago revealed my first ever encounter with chromosome changes........but no MDS and all normal blast counts.....my marrow slide was viewed and my marrow is in excellent condition. After talking with family, praying and waiting for an answer from Jesus, we were able to make the decision that transplant was not an option that we wanted to consider right then. This is where I need people to understand that I have made decisions based on so many things in my life.
You see, I am a born-again Christian and believe that Jesus has told me that He is going to heal me completely from FA. This might sound crazy but I believe that He has spoken to me. Not only that, but I have had many pastors who do not know me, or know FA......give a word to me from God concerning my healing that I believe Jesus is gradually completing. I don't know how else to explain such a thing to you than......I believe, I have heard and I will trust no matter what happens..........
Well, I have lived with no consequence to my marrow with chromosome changes for 11 years...Praise God...He has done so many miracles within me......the doctors said I was probably infertile, I fell pregnant within 1 month.......I am married, I am a registered nurse, I have had great counts, I have loved life.......God has done many miracles in my life and I believe that I have beaten odds that they have down on research about FA..........I want you to understand that despite the chromosome changes that I have had over the last 11 years, Jesus has sustained me and I have followed what I know He has told me and He has kept me safe and performed amazing things in my life....not just with FA but emotionally and spiritually. I would be writing a huge essay if I told you about everything God has done.
However, that doesn't stop me from being human. It doesn't stop the tears.......and the sadness and the fear that comes over me sometimes. This year I found out that I had a recent chromosome change. And it broke my heart. I didn't share that I had a recent one because I was so afraid that people would judge me and think I was silly to not throw myself into a transplant. I knew of people who had experienced their child having changes and were now going to transplant and I thought they would think I was an idiot for not going to transplant myself.
You see transplant is a very sore topic for me. My brother died after transplant....I saw all that he went through.....I had a doctor tell me that in 10 years from 1994 this would be me......what a huge, terrible, most destructive thing to say to a child.........that in 10 years that would be me. I will not accept that...even though it has now been 11 years since then...I do not accept that negativity in my life.
Please, I don't want to make anyone cross.......medical staff....doctors, nurses and anyone else are there and are to be used by God to help in the healing process of diseases....but these people also can bring destruction into people's lives through what they say and proclaim over someones' life and that is wrong. I am a nurse myself so I do not believe that I am being judgmental here.......I work with very unwell people who have cancers and stuff..............
I do not think transplant is wrong.......It scares me to death!!! HA!!!! But I know that my Jesus has spoken to me and I feel and know and have always thought that transplant is not for me and that my Jesus will heal me.
Going back to my recent chromosome changes......I was shocked and I am still very shocked and scared. This has been a huge battle for me the last 3 months especially. The good thing is that my marrow is not MDS or leukemic. I have slight dysplasia which is so normal for an adult with FA. But it is not MDS at all. My blast count is under 5.....and that is normal......so I am not leukemic. The doctor said that he is amazed by my marrow. He told me that my marrow is in great condition still and that the cells are very efficient...there is no sign of aplastic anaemia........it is not leukemic....but he is concerned that my marrow has withstood so many changes...he is concerned about when it will start to complain about these changes.....and he means by that...when will the dysplasia go out of control, the blast count rise....but they can't tell you that. Because of my huge, emotional issues and anxiety they are concerned about me having a transplant because they do not want my emotional health to be soooo scarred. And that can happen. A person may have a transplant, but if they experience so much emotional stress during that, the person can go down hill. I have issues with doctors examining me...huge issues that I can't go into...huge things that make me collapse when I am confronting it...I have a physchologist to work through all this but it is huge...........I get concerned that you may read this and think.....but you are silly, you need to have a transplant............and then I remember at camp, Mrs Frohmeyer, I hope you don't mind....but when there was a discussion about transplant and there were parents questioning what was right for a child.......you mentioned that one thing that is right for a child, may not be necessarily right for another...and that there are circumstances that will make a person decide if transplant is right or not............and I totally agree..........there are circumstances that people would not even know about that make us choose the decisions we choose and no one can judge.
Now I was alarmed by this recent change.....I was alarmed heaps.....so I understand how you want to kick and scream and feel so much dread when a change happens......the thing is that now my platelet count has dropped......I usually sit around 115 000 consistently and I became very alarmed the last couple of months....last 4 months or so that it has been dropping...oh it dropped to 60 000 one week.....and I freaked.....it then went back to 90 000 and then 70 000 and then 60 000.......you see this is totally NOT me....I am not under 100 000 at all usually and so I have been concerned. I know that the doctor said to me that the other way that you can see chromosome changes having an affect on the marrow is a decrease in platelet count. So you can imagine how I have been feeling....."oh, no"....but then it is too early to tell...there could be other reasons for this...but it is still scary.
However, I still cannot deny my Lord. I still cannot deny the voice that tugs at my heart telling me that "what healing has begun will be made complete"..........I do believe so strongly that Jesus has spoken to me and that He will heal me and I cannot deny that. Oh, I feel very upset and have been very depressed lately but I cannot turn away from the fact that Jesus is faithful and when He promises something He always fulfills it. Jesus never promises and then doesn't fulfill.... The Bible says that Jesus will always fulfill what He has told us. I have no problem with that. When I start to be afraid and panic and think, "oh no, it is not going to happen", I call out to Jesus and remind Him that He has promised me healing and can He please show me, give me insight because I am scared. This moring I was feeling a bit scared and then my mother sent me a verse from Ephesians chapter 3 verse 20
"To Him who by means of His power working in us is able to do so much more than we can ever ask for, or even think of: To God be the Glory in the church and in Christ Jesus for all time, for ever and ever! Amen"
Alan and I are not being unwise. Just because we believe that Jesus will heal me completely does not mean that we turn a blind eye. Jesus never wants us to be unwise but to use wisdom. So we are prepared to go to transplant if Jesus tells us to do that eventually. We will have everything planned just in case....but we will never go to transplant unless we know that Jesus is leading us that way. I do get scared and think, this is it......but Jesus is bigger than FA. Jesus is bigger than statistics and He can heal whenever He wants to. Some people are healed immediately and others are healed in God's time.....we don't know why........so I am asking you that you don't place me with the FA statistics but that you join together with me in fighting this disorder because I know that nothing is impossible for God....I know Jesus is faithful and always carries out His promise and I know He has spoken to me.....I have no idea why this is happening and why...but I have to trust God.....it is very hard to do but when I talk about it I cannot stop telling you about how I know this and that Jesus is bigger than FA.
Please understand that I do have times, lots if times when I feel grief over FA and what can happen....but Jesus does have more power and I always feels empowered when I lean on Him.
He is in control.
Love Charisse
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Sunday, October 2, 2005 3:49 AM CDT
***UPDATE Sunday the 9th October***
Hello, thanks to all of you who check on me and pray for me. I have been having a hard time at the moment. Yesterday, in the morning I even wrote to my friend saying I was feeling positive and unfortunately the rest of my day was a mess and I was so depressed that I was crying and crying. So, Alan and I asked my sister and her husband to babysit Isaac while Alan and I went out for tea last night and caught a movie as well. We really needed some time together. It has been a hard week and when you feel depressed, and Alan had been interstate a short while, I felt like the pressure had been on and needed a break. It is so hard to function properly when you feel this way...and depressed.
Well, I went to church today and Jesus is one Almighty God. He is awesome. Since I was in the USA back in August I really feel like Jesus has been speaking to me about a few things.....I feel very humbled before God. We as human beings do not deserve His grace and mercy.....I do not deserve His grace and mercy but because Jesus loves me, He has been merciful and shown me grace in so many ways. Firstly, I have accepted Jesus and He has given me salvation and saved me....I did that when I was 5 and have never regretted it. That is the first amount of grace and love He has shown me. Then as I recall how upset I get and sometimes angry with those around me and myself when I am severely depressed I think about how I don't deserve His grace, mery and love, but He gives it anyway and forgives me of everything. I sat there, today, in church, listening to the worship, listening to God's Word and felt great love and gratefulness towards Jesus. And I just thanked Him and the tears just flowed and flowed. I took communion and realised, again, how great a sacrifice He has done for me and I cried and felt so humbled before Him. You know the Bible says in Romans chapter 3 verse 23, "For all have sinned and fall short of the Glory of God".......we have all sinned, we all don't deserve His grace and mercy but because He loves us, He gives of it freely. That is awesome. I would never survive if I didn't have Jesus. I am so grateful to those who help me when I am having a hard time and when I get grumpy because I am depressed and not coping too well. lots of you have to endure a lot and I am both sorry and grateful for you having to do that. So, if you read this and you are one of those people. Thank you. I publically thank you from the bottom of my heart and have been reminded today, of how precious grace and mercy really is to me. Thank you.
Please still keep praying for me on this walk of faith. I am believing that Jesus will heal me of fanconi anaemia and depression. I am learning a lot on this walk of faith but it is so hard and sometimes I feel so pulled under that I need others to hold me up. So please keep praying.
Love you all,
Charisse
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Sunday October 2nd
Most of you know that I suffer from
anxiety and depression on and off.
I had a hard time last weekend cause I was so tired and I thought I was improving but this weekend I am feeling so sad and depressed.
I really need your prayers so I start to feel better about myself. When it comes down to this I find it so hard to explain how I am feeling and I use my techniques to help my thought processes but sometimes, when you are depressed it is so hard to lift it.
God is great.......I don't deny that at all. I think I am having a down period again and need help to be lifted out if it. It happens every now and then.
Hope you are all doing fine.
Love Charisse
Hello Family and Friends,
well I hope that you all got to read my important update before this and if you haven't, please go to past journal entries and read it cause it will help you understand my direction with decision making and so forth.
Well, I told you about my past and recent chromosome changes and mentioned that both Alan and I believe that Jesus does not intend for us to go down the road of transplant yet. There has been much discussion with various doctors over this subject and for certain reasons we are going to wait. My blast count is normal under 5nd so far I have everything to live for. Transplant, for certain reasons is not the best option to me right now. And for sprirtual reasons, we strongly do not believe that NOW is the right time. If God changes that then we will look at that. However, I am finding a marrow donor since I actually don't have one. Just in case because Jesus doesn't want me to be unwise....and we feel that this is right. However, transplant is constantly on my mind....and all the emotions that come with FA are constantly in the back of my head.....but I have made decisions 11 years ago not to transplant because of certain reasons that I cannot explain...and I wasn't sure if with this recent change, whether that would change....however, it has not changed and I am praying that the Lord will give me many more years ---- I am believing for healing.
Anyway, when you have something like FA...you are constantly trying to beat battles spiritually and medically. Three years ago we had Isaac, our son and we have an outlook on life...that FA will not get in our way. Jesus has blessed us with a good life and will guide every step taken whether it ends up with a tranplant or not. Remember that Jesus is the head over our lives, not the medical world and that there have been amazing miracles performed by Jesus that the doctors cannot explain....why not with FA....YES!!! I am not disregarding that everything that is going on is not serious. Many of you know how serious I take all of this stuff...and how it affects me emotionally. Our eyes are open wide to the possiblities of what can happen to me with FA and my marrow and everything else that they talk about. However, we are trying not to let that affect our outlook or approach on life. Obviously FA plays a big part in our life, but we don't want it to rule us no matter what happens. That doesn't mean you make silly decisions...all decisions made are made after months and months of deep thought, discussions and consultations and prayer.
Alan and I long for another baby amongst all this and my doctor advices that we do all that now rather than wait...Reason being that if I ever needed to transplant, better to have the baby before than after, and do it while I am well....and I am well....we have been praying about this and feel it is the right direction. You may have questions, "but you have chromosome changes?" "what if you die"....well, yes, I have had chromsome changes for 11 years and I will continue to monitor them and my blast cell...if it goes up above 5..we will need to consider transplant......and I am not focusing on the death...however, I know the reality of FA like you do...and we have thought about that too.....if anything ever happened to me....we would like Isaac to have a sibling - so he can have support rather than be an only child. Alan and I have spoken in depth about all this....and we have gone through it with doctors and counsellors...you never make a decision without consulting everything...I did that even with Isaac.....I am going to live my life happily...and so is my family...so amongst threats and turmoil, there is joy and peace and love... my family, my doctors - they all support me and most of all...we feel what Jesus is telling us.....oh, I am not pregnant - I just wanted to share as an FA adult what issues you do deal with...it is way different to a child.
Now enough of all that deep thinking. Sometimes it makes my head hurt so much because I consider all this so much. My toe....I wrote that my toe was red and sore and has been for a number of weeks. The GP wanted to give me IV antibiotics and they thought it was cellulitis....but I went to Dr. Ben on Monday, my haematologist, and my toe actually has burritis...an infection of the pocket of fluid that lubricates the joint in the toe...that is why I can't move my toe. We are trying 3 weeks of oral antibiotics. I know that IV can be quicker, but for certrain issues we are tyring this first. I have had oral antibiotics for a total of 2 weeks now and my toe actually looks better. The swelling has come down a bit and it is less angry looking. However, Dr. Ben did say that I shouldn't be surprised if it flared up every now and then in the next couple of weeks because it was a very aggressive infection. If we don't get rid of it all, I suppose we can do IV. You see, this month I have dealt with so many feelings considering my brother's death (he had FA)....that I get very depressed in hospital, very depressed.....so we are trying to decrease that time. In Australia, we are very aware of the whole person. The emotional side is deemed just as important as the medical side. So sometimes when you may think "she should be in hospital or have IV"...there are reasons you may not know about as to why I am not. Why do I write and say this....may be this will help people understand what goes on in our brains as patients. Hope all I said doesn't sound judgemental because it is certainly not meant to be. I tend to write exactly how I speak. HA!
It is my brother's 11th year anniversary of his death tomorrow the 29th October....he died in 1994 after a transplant. I love him with all my heart.
To add to my toe, I actually have come down with a flu bug the last 2 days. HA!!! I actually get sick very rarely. But whenever I am really down emotionally, I seem to be more vulnerable. Also, we are trying to balance my IVIG infusions at the moment. They think I am getting too much of a peak with the infusion and then getting low over the 6 weeks too fast......so I will have a blood test to check my levels and they are thinking of decreasing the IgG, but doing it 4 weekly so I have a more even spread and therefore, less vulnerable to infection. Make sense? I know what I mean.....hehe.
Ok, well, that is certainly enough "update". I pray that you are all well and will update again soon.
Bless you all and love you,
Charisse
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Sunday, October 16, 2005 1:22 AM CDT
**New update**
Monday 24th October 2005
Good Morning,
I am going to leave the last update on here still for a while so I know that everyone has had a chance to read it and know what is happening with me.
Please keep me in prayer today. I have an appointment with my haematologist today at the Women's and children's Hospital with Dr Ben. I have been feeling nervous and a bit stressed about this all week...all last week...and I had a "not so good" weekend with depression and anxiety. There are a lot of issues I will be discussing in regards to my marrow.....also I just get uneasy cause it is where I grew up with Fanconi Anaemia..and where my brother died...and it has been 11 years since he died this Friday..so I feel a bit emotional.
Also I have had an infected toe for over a week and it isn't healing. It looks like cellulitis...and they wanted me to have IV antibiotic last week..hehe..but I have been holding out cause I didn't want to go to hospital cause I feel too emotional at the moment..so I have been praying the oral antibiotics will work...ha! My toe it STILL bright red and sore...hmmm..we will see what Dr. Ben has to say about it today.
Anyway, got to go.
Love Charisse
**End of update**
Dear Family and Friends,
As most of you know everyday I face the battle with Fanconi Anaemia, anxeity and depression. Well I am going to share with you something I have not shared before. Somthing that I have not shared because it has been a part of my life for a while and I never thought of sharing it with you guys. Then when something happened this year, it brought it to mind again. Then I felt reluctant to share because I felt like I would be judged by so many families and thought of badly. Some of you may not understand why I have made certain decisions and some of you may think I am stupid and not making the right decisions.....I don't know....it scares me to think of how I am viewed sometimes.....and I am being honest in saying that because that is how I feel. But if I share from my heart, may be you will all understand my position.
Here goes......for the last 10 to 11 years I have had chromosome changes in my marrow. I had my first chromosome changes about 11 years ago. It was a shock back then. We all know that research states that chromosome changes/clones are all likely to eventually lead to leukemia or MDS. Therefore, medical specialists often and most always reccomend a bone marrow transplant early on in the peace while you are well in order to have the best outcome with the bone marrow transplant.
We also know, through research, that chromosome changes/clones will not necessarily lead to leukemia unless the chromosome changes are accompanied with MDS or increased blast count. For those of you who are not aware, there is a certain percentage of dysplasia that deems it to be called MDS and a certain percentage of blast cells that make you leukemic or normal or in the grey area.
Now I have explained this.....so my cytogenetics results 11 years ago revealed my first ever encounter with chromosome changes........but no MDS and all normal blast counts.....my marrow slide was viewed and my marrow is in excellent condition. After talking with family, praying and waiting for an answer from Jesus, we were able to make the decision that transplant was not an option that we wanted to consider right then. This is where I need people to understand that I have made decisions based on so many things in my life.
You see, I am a born-again Christian and believe that Jesus has told me that He is going to heal me completely from FA. This might sound crazy but I believe that He has spoken to me. Not only that, but I have had many pastors who do not know me, or know FA......give a word to me from God concerning my healing that I believe Jesus is gradually completing. I don't know how else to explain such a thing to you than......I believe, I have heard and I will trust no matter what happens..........
Well, I have lived with no consequence to my marrow with chromosome changes for 11 years...Praise God...He has done so many miracles within me......the doctors said I was probably infertile, I fell pregnant within 1 month.......I am married, I am a registered nurse, I have had great counts, I have loved life.......God has done many miracles in my life and I believe that I have beaten odds that they have down on research about FA..........I want you to understand that despite the chromosome changes that I have had over the last 11 years, Jesus has sustained me and I have followed what I know He has told me and He has kept me safe and performed amazing things in my life....not just with FA but emotionally and spiritually. I would be writing a huge essay if I told you about everything God has done.
However, that doesn't stop me from being human. It doesn't stop the tears.......and the sadness and the fear that comes over me sometimes. This year I found out that I had a recent chromosome change. And it broke my heart. I didn't share that I had a recent one because I was so afraid that people would judge me and think I was silly to not throw myself into a transplant. I knew of people who had experienced their child having changes and were now going to transplant and I thought they would think I was an idiot for not going to transplant myself.
You see transplant is a very sore topic for me. My brother died after transplant....I saw all that he went through.....I had a doctor tell me that in 10 years from 1994 this would be me......what a huge, terrible, most destructive thing to say to a child.........that in 10 years that would be me. I will not accept that...even though it has now been 11 years since then...I do not accept that negativity in my life.
Please, I don't want to make anyone cross.......medical staff....doctors, nurses and anyone else are there and are to be used by God to help in the healing process of diseases....but these people also can bring destruction into people's lives through what they say and proclaim over someones' life and that is wrong. I am a nurse myself so I do not believe that I am being judgmental here.......I work with very unwell people who have cancers and stuff..............
I do not think transplant is wrong.......It scares me to death!!! HA!!!! But I know that my Jesus has spoken to me and I feel and know and have always thought that transplant is not for me and that my Jesus will heal me.
Going back to my recent chromosome changes......I was shocked and I am still very shocked and scared. This has been a huge battle for me the last 3 months especially. The good thing is that my marrow is not MDS or leukemic. I have slight dysplasia which is so normal for an adult with FA. But it is not MDS at all. My blast count is under 5.....and that is normal......so I am not leukemic. The doctor said that he is amazed by my marrow. He told me that my marrow is in great condition still and that the cells are very efficient...there is no sign of aplastic anaemia........it is not leukemic....but he is concerned that my marrow has withstood so many changes...he is concerned about when it will start to complain about these changes.....and he means by that...when will the dysplasia go out of control, the blast count rise....but they can't tell you that. Because of my huge, emotional issues and anxiety they are concerned about me having a transplant because they do not want my emotional health to be soooo scarred. And that can happen. A person may have a transplant, but if they experience so much emotional stress during that, the person can go down hill. I have issues with doctors examining me...huge issues that I can't go into...huge things that make me collapse when I am confronting it...I have a physchologist to work through all this but it is huge...........I get concerned that you may read this and think.....but you are silly, you need to have a transplant............and then I remember at camp, Mrs Frohmeyer, I hope you don't mind....but when there was a discussion about transplant and there were parents questioning what was right for a child.......you mentioned that one thing that is right for a child, may not be necessarily right for another...and that there are circumstances that will make a person decide if transplant is right or not............and I totally agree..........there are circumstances that people would not even know about that make us choose the decisions we choose and no one can judge.
Now I was alarmed by this recent change.....I was alarmed heaps.....so I understand how you want to kick and scream and feel so much dread when a change happens......the thing is that now my platelet count has dropped......I usually sit around 115 000 consistently and I became very alarmed the last couple of months....last 4 months or so that it has been dropping...oh it dropped to 60 000 one week.....and I freaked.....it then went back to 90 000 and then 70 000 and then 60 000.......you see this is totally NOT me....I am not under 100 000 at all usually and so I have been concerned. I know that the doctor said to me that the other way that you can see chromosome changes having an affect on the marrow is a decrease in platelet count. So you can imagine how I have been feeling....."oh, no"....but then it is too early to tell...there could be other reasons for this...but it is still scary.
However, I still cannot deny my Lord. I still cannot deny the voice that tugs at my heart telling me that "what healing has begun will be made complete"..........I do believe so strongly that Jesus has spoken to me and that He will heal me and I cannot deny that. Oh, I feel very upset and have been very depressed lately but I cannot turn away from the fact that Jesus is faithful and when He promises something He always fulfills it. Jesus never promises and then doesn't fulfill.... The Bible says that Jesus will always fulfill what He has told us. I have no problem with that. When I start to be afraid and panic and think, "oh no, it is not going to happen", I call out to Jesus and remind Him that He has promised me healing and can He please show me, give me insight because I am scared. This moring I was feeling a bit scared and then my mother sent me a verse from Ephesians chapter 3 verse 20
"To Him who by means of His power working in us is able to do so much more than we can ever ask for, or even think of: To God be the Glory in the church and in Christ Jesus for all time, for ever and ever! Amen"
Alan and I are not being unwise. Just because we believe that Jesus will heal me completely does not mean that we turn a blind eye. Jesus never wants us to be unwise but to use wisdom. So we are prepared to go to transplant if Jesus tells us to do that eventually. We will have everything planned just in case....but we will never go to transplant unless we know that Jesus is leading us that way. I do get scared and think, this is it......but Jesus is bigger than FA. Jesus is bigger than statistics and He can heal whenever He wants to. Some people are healed immediately and others are healed in God's time.....we don't know why........so I am asking you that you don't place me with the FA statistics but that you join together with me in fighting this disorder because I know that nothing is impossible for God....I know Jesus is faithful and always carries out His promise and I know He has spoken to me.....I have no idea why this is happening and why...but I have to trust God.....it is very hard to do but when I talk about it I cannot stop telling you about how I know this and that Jesus is bigger than FA.
Please understand that I do have times, lots if times when I feel grief over FA and what can happen....but Jesus does have more power and I always feels empowered when I lean on Him.
He is in control.
Love Charisse
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Sunday, October 2, 2005 3:49 AM CDT
***UPDATE Sunday the 9th October***
Hello, thanks to all of you who check on me and pray for me. I have been having a hard time at the moment. Yesterday, in the morning I even wrote to my friend saying I was feeling positive and unfortunately the rest of my day was a mess and I was so depressed that I was crying and crying. So, Alan and I asked my sister and her husband to babysit Isaac while Alan and I went out for tea last night and caught a movie as well. We really needed some time together. It has been a hard week and when you feel depressed, and Alan had been interstate a short while, I felt like the pressure had been on and needed a break. It is so hard to function properly when you feel this way...and depressed.
Well, I went to church today and Jesus is one Almighty God. He is awesome. Since I was in the USA back in August I really feel like Jesus has been speaking to me about a few things.....I feel very humbled before God. We as human beings do not deserve His grace and mercy.....I do not deserve His grace and mercy but because Jesus loves me, He has been merciful and shown me grace in so many ways. Firstly, I have accepted Jesus and He has given me salvation and saved me....I did that when I was 5 and have never regretted it. That is the first amount of grace and love He has shown me. Then as I recall how upset I get and sometimes angry with those around me and myself when I am severely depressed I think about how I don't deserve His grace, mery and love, but He gives it anyway and forgives me of everything. I sat there, today, in church, listening to the worship, listening to God's Word and felt great love and gratefulness towards Jesus. And I just thanked Him and the tears just flowed and flowed. I took communion and realised, again, how great a sacrifice He has done for me and I cried and felt so humbled before Him. You know the Bible says in Romans chapter 3 verse 23, "For all have sinned and fall short of the Glory of God".......we have all sinned, we all don't deserve His grace and mercy but because He loves us, He gives of it freely. That is awesome. I would never survive if I didn't have Jesus. I am so grateful to those who help me when I am having a hard time and when I get grumpy because I am depressed and not coping too well. lots of you have to endure a lot and I am both sorry and grateful for you having to do that. So, if you read this and you are one of those people. Thank you. I publically thank you from the bottom of my heart and have been reminded today, of how precious grace and mercy really is to me. Thank you.
Please still keep praying for me on this walk of faith. I am believing that Jesus will heal me of fanconi anaemia and depression. I am learning a lot on this walk of faith but it is so hard and sometimes I feel so pulled under that I need others to hold me up. So please keep praying.
Love you all,
Charisse
***************
Sunday October 2nd
Most of you know that I suffer from
anxiety and depression on and off.
I had a hard time last weekend cause I was so tired and I thought I was improving but this weekend I am feeling so sad and depressed.
I really need your prayers so I start to feel better about myself. When it comes down to this I find it so hard to explain how I am feeling and I use my techniques to help my thought processes but sometimes, when you are depressed it is so hard to lift it.
God is great.......I don't deny that at all. I think I am having a down period again and need help to be lifted out if it. It happens every now and then.
Hope you are all doing fine.
Love Charisse
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