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
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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, June 30, 2006
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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